hiv aids case study in india

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• Published: 24 November 2021

A study of awareness on HIV/AIDS among adolescents: A Longitudinal Study on UDAYA data

• Shobhit Srivastava   ORCID: orcid.org/0000-0002-7138-4916 1 ,
• Shekhar Chauhan   ORCID: orcid.org/0000-0002-6926-7649 2 ,
• Ratna Patel   ORCID: orcid.org/0000-0002-5371-7369 3 &
• Pradeep Kumar   ORCID: orcid.org/0000-0003-4259-820X 1  

Scientific Reports volume  11 , Article number:  22841 ( 2021 ) Cite this article

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Acquired Immunodeficiency Syndrome caused by Human Immunodeficiency Virus (HIV) poses a severe challenge to healthcare and is a significant public health issue worldwide. This study intends to examine the change in the awareness level of HIV among adolescents. Furthermore, this study examined the factors associated with the change in awareness level on HIV-related information among adolescents over the period. Data used for this study were drawn from Understanding the lives of adolescents and young adults, a longitudinal survey on adolescents aged 10–19 in Bihar and Uttar Pradesh. The present study utilized a sample of 4421 and 7587 unmarried adolescent boys and girls, respectively aged 10–19 years in wave-1 and wave-2. Descriptive analysis and t-test and proportion test were done to observe changes in certain selected variables from wave-1 (2015–2016) to wave-2 (2018–2019). Moreover, random effect regression analysis was used to estimate the association of change in HIV awareness among unmarried adolescents with household and individual factors. The percentage of adolescent boys who had awareness regarding HIV increased from 38.6% in wave-1 to 59.9% in wave-2. Among adolescent girls, the percentage increased from 30.2 to 39.1% between wave-1 & wave-2. With the increase in age and years of schooling, the HIV awareness increased among adolescent boys ([Coef: 0.05; p  < 0.01] and [Coef: 0.04; p  < 0.01]) and girls ([Coef: 0.03; p  < 0.01] and [Coef: 0.04; p  < 0.01]), respectively. The adolescent boys [Coef: 0.06; p  < 0.05] and girls [Coef: 0.03; p  < 0.05] who had any mass media exposure were more likely to have an awareness of HIV. Adolescent boys' paid work status was inversely associated with HIV awareness [Coef: − 0.01; p  < 0.10]. Use of internet among adolescent boys [Coef: 0.18; p  < 0.01] and girls [Coef: 0.14; p  < 0.01] was positively associated with HIV awareness with reference to their counterparts. There is a need to intensify efforts in ensuring that information regarding HIV should reach vulnerable sub-groups, as outlined in this study. It is important to mobilize the available resources to target the less educated and poor adolescents, focusing on rural adolescents.

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Introduction.

Acquired Immunodeficiency Syndrome (AIDS) caused by Human Immunodeficiency Virus (HIV) poses a severe challenge to healthcare and is a significant public health issue worldwide. So far, HIV has claimed almost 33 million lives; however, off lately, increasing access to HIV prevention, diagnosis, treatment, and care has enabled people living with HIV to lead a long and healthy life 1 . By the end of 2019, an estimated 38 million people were living with HIV 1 . More so, new infections fell by 39 percent, and HIV-related deaths fell by almost 51 percent between 2000 and 2019 1 . Despite all the positive news related to HIV, the success story is not the same everywhere; HIV varies between region, country, and population, where not everyone is able to access HIV testing and treatment and care 1 . HIV/AIDS holds back economic growth by destroying human capital by predominantly affecting adolescents and young adults 2 .

There are nearly 1.2 billion adolescents (10–19 years) worldwide, which constitute 18 percent of the world’s population, and in some countries, adolescents make up as much as one-fourth of the population 3 . In India, adolescents comprise more than one-fifth (21.8%) of the total population 4 . Despite a decline projection for the adolescent population in India 5 , there is a critical need to hold adolescents as adolescence is characterized as a period when peer victimization/pressure on psychosocial development is noteworthy 6 . Peer victimization/pressure is further linked to risky sexual behaviours among adolescents 7 , 8 . A higher proportion of low literacy in the Indian population leads to a low level of awareness of HIV/AIDS 9 . Furthermore, the awareness of HIV among adolescents is quite alarming 10 , 11 , 12 .

Unfortunately, there is a shortage of evidence on what predicts awareness of HIV among adolescents. Almost all the research in India is based on beliefs, attitudes, and awareness of HIV among adolescents 2 , 12 . However, few other studies worldwide have examined mass media as a strong predictor of HIV awareness among adolescents 13 . Mass media is an effective channel to increase an individuals’ knowledge about sexual health and improve understanding of facilities related to HIV prevention 14 , 15 . Various studies have outlined other factors associated with the increasing awareness of HIV among adolescents, including; age 16 , 17 , 18 , occupation 18 , education 16 , 17 , 18 , 19 , sex 16 , place of residence 16 , marital status 16 , and household wealth index 16 .

Several community-based studies have examined awareness of HIV among Indian adolescents 2 , 10 , 12 , 20 , 21 , 22 . However, studies investigating awareness of HIV among adolescents in a larger sample size remained elusive to date, courtesy of the unavailability of relevant data. Furthermore, no study in India had ever examined awareness of HIV among adolescents utilizing information on longitudinal data. To the author’s best knowledge, this is the first study in the Indian context with a large sample size that examines awareness of HIV among adolescents and combines information from a longitudinal survey. Therefore, this study intends to examine the change in the awareness level of HIV among adolescents. Furthermore, this study examined the factors associated with a change in awareness level on HIV-related information among adolescents over the period.

Data and methods

Data used for this study were drawn from Understanding the lives of adolescents and young adults (UDAYA), a longitudinal survey on adolescents aged 10–19 in Bihar and Uttar Pradesh 23 . The first wave was conducted in 2015–2016, and the follow-up survey was conducted after three years in 2018–2019 23 . The survey provides the estimates for state and the sample of unmarried boys and girls aged 10–19 and married girls aged 15–19. The study adopted a systematic, multi-stage stratified sampling design to draw sample areas independently for rural and urban areas. 150 primary sampling units (PSUs)—villages in rural areas and census wards in urban areas—were selected in each state, using the 2011 census list of villages and wards as the sampling frame. In each primary sampling unit (PSU), households to be interviewed were selected by systematic sampling. More details about the study design and sampling procedure have been published elsewhere 23 . Written consent was obtained from the respondents in both waves. In wave 1 (2015–2016), 20,594 adolescents were interviewed using the structured questionnaire with a response rate of 92%.

Moreover, in wave 2 (2018–2019), the study interviewed the participants who were successfully interviewed in 2015–2016 and who consented to be re-interviewed 23 . Of the 20,594 eligible for the re-interview, the survey re-interviewed 4567 boys and 12,251 girls (married and unmarried). After excluding the respondents who gave an inconsistent response to age and education at the follow-up survey (3%), the final follow-up sample covered 4428 boys and 11,864 girls with the follow-up rate of 74% for boys and 81% for girls. The effective sample size for the present study was 4421 unmarried adolescent boys aged 10–19 years in wave-1 and wave-2. Additionally, 7587 unmarried adolescent girls aged 10–19 years were interviewed in wave-1 and wave-2 23 . The cases whose follow-up was lost were excluded from the sample to strongly balance the dataset and set it for longitudinal analysis using xtset command in STATA 15. The survey questionnaire is available at https://dataverse.harvard.edu/file.xhtml?fileId=4163718&version=2.0 & https://dataverse.harvard.edu/file.xhtml?fileId=4163720&version=2.0 .

Outcome variable

HIV awareness was the outcome variable for this study, which is dichotomous. The question was asked to the adolescents ‘Have you heard of HIV/AIDS?’ The response was recorded as yes and no.

Exposure variables

The predictors for this study were selected based on previous literature. These were age (10–19 years at wave 1, continuous variable), schooling (continuous), any mass media exposure (no and yes), paid work in the last 12 months (no and yes), internet use (no and yes), wealth index (poorest, poorer, middle, richer, and richest), religion (Hindu and Non-Hindu), caste (Scheduled Caste/Scheduled Tribe, Other Backward Class, and others), place of residence (urban and rural), and states (Uttar Pradesh and Bihar).

Exposure to mass media (how often they read newspapers, listened to the radio, and watched television; responses on the frequencies were: almost every day, at least once a week, at least once a month, rarely or not at all; adolescents were considered to have any exposure to mass media if they had exposure to any of these sources and as having no exposure if they responded with ‘not at all’ for all three sources of media) 24 . Household wealth index based on ownership of selected durable goods and amenities with possible scores ranging from 0 to 57; households were then divided into quintiles, with the first quintile representing households of the poorest wealth status and the fifth quintile representing households with the wealthiest status 25 .

Statistical analysis

Descriptive analysis was done to observe the characteristics of unmarried adolescent boys and girls at wave-1 (2015–2016). In addition, the changes in certain selected variables were observed from wave-1 (2015–2016) to wave-2 (2018–2019), and the significance was tested using t-test and proportion test 26 , 27 . Moreover, random effect regression analysis 28 , 29 was used to estimate the association of change in HIV awareness among unmarried adolescents with household factors and individual factors. The random effect model has a specific benefit for the present paper's analysis: its ability to estimate the effect of any variable that does not vary within clusters, which holds for household variables, e.g., wealth status, which is assumed to be constant for wave-1 and wave-2 30 .

Table 1 represents the socio-economic profile of adolescent boys and girls. The estimates are from the baseline dataset, and it was assumed that none of the household characteristics changed over time among adolescent boys and girls.

Figure  1 represents the change in HIV awareness among adolescent boys and girls. The percentage of adolescent boys who had awareness regarding HIV increased from 38.6% in wave-1 to 59.9% in wave-2. Among adolescent girls, the percentage increased from 30.2% in wave-1 to 39.1% in wave-2.

The percenate of HIV awareness among adolescent boys and girls, wave-1 (2015–2016) and wave-2 (2018–2019).

Table 2 represents the summary statistics for explanatory variables used in the analysis of UDAYA wave-1 and wave-2. The exposure to mass media is almost universal for adolescent boys, while for adolescent girls, it increases to 93% in wave-2 from 89.8% in wave-1. About 35.3% of adolescent boys were engaged in paid work during wave-1, whereas in wave-II, the share dropped to 33.5%, while in the case of adolescent girls, the estimates are almost unchanged. In wave-1, about 27.8% of adolescent boys were using the internet, while in wave-2, there is a steep increase of nearly 46.2%. Similarly, in adolescent girls, the use of the internet increased from 7.6% in wave-1 to 39.3% in wave-2.

Table 3 represents the estimates from random effects for awareness of HIV among adolescent boys and girls. It was found that with the increases in age and years of schooling the HIV awareness increased among adolescent boys ([Coef: 0.05; p  < 0.01] and [Coef: 0.04; p  < 0.01]) and girls ([Coef: 0.03; p  < 0.01] and [Coef: 0.04; p  < 0.01]), respectively. The adolescent boys [Coef: 0.06; p  < 0.05] and girls [Coef: 0.03; p  < 0.05] who had any mass media exposure were more likely to have an awareness of HIV in comparison to those who had no exposure to mass media. Adolescent boys' paid work status was inversely associated with HIV awareness about adolescent boys who did not do paid work [Coef: − 0.01; p  < 0.10]. Use of the internet among adolescent boys [Coef: 0.18; p  < 0.01] and girls [Coef: 0.14; p  < 0.01] was positively associated with HIV awareness in reference to their counterparts.

The awareness regarding HIV increases with the increase in household wealth index among both adolescent boys and girls. The adolescent girls from the non-Hindu household had a lower likelihood to be aware of HIV in reference to adolescent girls from Hindu households [Coef: − 0.09; p  < 0.01]. Adolescent girls from non-SC/ST households had a higher likelihood of being aware of HIV in reference to adolescent girls from other caste households [Coef: 0.04; p  < 0.01]. Adolescent boys [Coef: − 0.03; p  < 0.01] and girls [Coef: − 0.09; p  < 0.01] from a rural place of residence had a lower likelihood to be aware about HIV in reference to those from the urban place of residence. Adolescent boys [Coef: 0.04; p  < 0.01] and girls [Coef: 0.02; p  < 0.01] from Bihar had a higher likelihood to be aware about HIV in reference to those from Uttar Pradesh.

This is the first study of its kind to address awareness of HIV among adolescents utilizing longitudinal data in two indian states. Our study demonstrated that the awareness of HIV has increased over the period; however, it was more prominent among adolescent boys than in adolescent girls. Overall, the knowledge on HIV was relatively low, even during wave-II. Almost three-fifths (59.9%) of the boys and two-fifths (39.1%) of the girls were aware of HIV. The prevalence of awareness on HIV among adolescents in this study was lower than almost all of the community-based studies conducted in India 10 , 11 , 22 . A study conducted in slums in Delhi has found almost similar prevalence (40% compared to 39.1% during wave-II in this study) of awareness of HIV among adolescent girls 31 . The difference in prevalence could be attributed to the difference in methodology, study population, and study area.

The study found that the awareness of HIV among adolescent boys has increased from 38.6 percent in wave-I to 59.9 percent in wave-II; similarly, only 30.2 percent of the girls had an awareness of HIV during wave-I, which had increased to 39.1 percent. Several previous studies corroborated the finding and noticed a higher prevalence of awareness on HIV among adolescent boys than in adolescent girls 16 , 32 , 33 , 34 . However, a study conducted in a different setting noticed a higher awareness among girls than in boys 35 . Also, a study in the Indian context failed to notice any statistical differences in HIV knowledge between boys and girls 18 . Gender seems to be one of the significant determinants of comprehensive knowledge of HIV among adolescents. There is a wide gap in educational attainment among male and female adolescents, which could be attributed to lower awareness of HIV among girls in this study. Higher peer victimization among adolescent boys could be another reason for higher awareness of HIV among them 36 . Also, cultural double standards placed on males and females that encourage males to discuss HIV/AIDS and related sexual matters more openly and discourage or even restrict females from discussing sexual-related issues could be another pertinent factor of higher awareness among male adolescents 33 . Behavioural interventions among girls could be an effective way to improving knowledge HIV related information, as seen in previous study 37 . Furthermore, strengthening school-community accountability for girls' education would augment school retention among girls and deliver HIV awareness to girls 38 .

Similar to other studies 2 , 10 , 17 , 18 , 39 , 40 , 41 , age was another significant determinant observed in this study. Increasing age could be attributed to higher education which could explain better awareness with increasing age. As in other studies 18 , 39 , 41 , 42 , 43 , 44 , 45 , 46 , education was noted as a significant driver of awareness of HIV among adolescents in this study. Higher education might be associated with increased probability of mass media and internet exposure leading to higher awareness of HIV among adolescents. A study noted that school is one of the important factors in raising the awareness of HIV among adolescents, which could be linked to higher awareness among those with higher education 47 , 48 . Also, schooling provides adolescents an opportunity to improve their social capital, leading to increased awareness of HIV.

Following previous studies 18 , 40 , 46 , the current study also outlines a higher awareness among urban adolescents than their rural counterparts. One plausible reason for lower awareness among adolescents in rural areas could be limited access to HIV prevention information 16 . Moreover, rural–urban differences in awareness of HIV could also be due to differences in schooling, exposure to mass media, and wealth 44 , 45 . The household's wealth status was also noted as a significant predictor of awareness of HIV among adolescents. Corroborating with previous findings 16 , 33 , 42 , 49 , this study reported a higher awareness among adolescents from richer households than their counterparts from poor households. This could be because wealthier families can afford mass-media items like televisions and radios for their children, which, in turn, improves awareness of HIV among adolescents 33 .

Exposure to mass media and internet access were also significant predictors of higher awareness of HIV among adolescents. This finding agrees with several previous research, and almost all the research found a positive relationship between mass-media exposure and awareness of HIV among adolescents 10 . Mass media addresses such topics more openly and in a way that could attract adolescents’ attention is the plausible reason for higher awareness of HIV among those having access to mass media and the internet 33 . Improving mass media and internet usage, specifically among rural and uneducated masses, would bring required changes. Integrating sexual education into school curricula would be an important means of imparting awareness on HIV among adolescents; however, this is debatable as to which standard to include the required sexual education in the Indian schooling system. Glick (2009) thinks that the syllabus on sexual education might be included during secondary schooling 44 . Another study in the Indian context confirms the need for sex education for adolescents 50 , 51 .

Limitations and strengths of the study

The study has several limitations. At first, the awareness of HIV was measured with one question only. Given that no study has examined awareness of HIV among adolescents using longitudinal data, this limitation is not a concern. Second, the study findings cannot be generalized to the whole Indian population as the study was conducted in only two states of India. However, the two states selected in this study (Uttar Pradesh and Bihar) constitute almost one-fourth of India’s total population. Thirdly, the estimates were provided separately for boys and girls and could not be presented combined. However, the data is designed to provide estimates separately for girls and boys. The data had information on unmarried boys and girls and married girls; however, data did not collect information on married boys. Fourthly, the study estimates might have been affected by the recall bias. Since HIV is a sensitive topic, the possibility of respondents modifying their responses could not be ruled out. Hawthorne effect, respondents, modifying aspect of their behaviour in response, has a role to play in HIV related study 52 . Despite several limitations, the study has specific strengths too. This is the first study examining awareness of HIV among adolescent boys and girls utilizing longitudinal data. The study was conducted with a large sample size as several previous studies were conducted in a community setting with a minimal sample size 10 , 12 , 18 , 20 , 53 .

The study noted a higher awareness among adolescent boys than in adolescent girls. Specific predictors of high awareness were also noted in the study, including; higher age, higher education, exposure to mass media, internet use, household wealth, and urban residence. Based on the study findings, this study has specific suggestions to improve awareness of HIV among adolescents. There is a need to intensify efforts in ensuring that information regarding HIV should reach vulnerable sub-groups as outlined in this study. It is important to mobilize the available resources to target the less educated and poor adolescents, focusing on rural adolescents. Investment in education will help, but it would be a long-term solution; therefore, public information campaigns could be more useful in the short term.

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This paper was written using data collected as part of Population Council’s UDAYA study, which is funded by the Bill and Melinda Gates Foundation and the David and Lucile Packard Foundation. No additional funds were received for the preparation of the paper.

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Conception and design of the study: S.S. and P.K.; analysis and/or interpretation of data: P.K. and S.S.; drafting the manuscript: S.C., and R.P.; reading and approving the manuscript: S.S., P.K., S.C. and R.P.

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Srivastava, S., Chauhan, S., Patel, R. et al. A study of awareness on HIV/AIDS among adolescents: A Longitudinal Study on UDAYA data. Sci Rep 11 , 22841 (2021). https://doi.org/10.1038/s41598-021-02090-9

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Strengthening India’s Response to HIV/AIDS Epidemic Through Strategic Planning, Innovative Financing, and Mathematical Modeling: Key Achievements over the Last 3 Decades

• Review Article
• Published: 07 September 2022
• Volume 102 , pages 791–809, ( 2022 )

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• Ramesh Bhat 1 ,
• Kurapati Sudhakar 2 ,
• Thomas Kurien 3 &
• Arni S. R. Srinivasa Rao 4  

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Indian HIV/AIDS numbers during the 2000s did not reach the high proportion of estimations provided by the WHO and UNAIDS. The number of HIV infections was high around 2.4 million in the 2020s, but given the country’s population of 1.38 billion, the general positivity rate remained very low compared with several countries. There were several reasons for a successful control of the epidemic in India, for example, setting-up of the National AIDS Control Programs, strategic priorities, surveillance and data management, mathematical modeling, and coordinating with the civil society and galvanizing public response. In this review article, we will provide a recollection of India’s response and management of the HIV/AIDS epidemic, challenges, and successful model building, and future challenges that play important role in sustaining the epidemic at a lower level and plan for reducing the future transmissions.

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1 Introduction

The National AIDS Control Programme (NACP) of India for its fourth phase 2012–2017 had budgeted a resource envelope of Rs. 143 billion ($2.70 billion). The resource envelope of NACP has been dominated by the donor support over its previous phases. The funding gaps of NACP were sufficiently large, and within the mandate of MDGs, various donor partners provided support to create capacities for effective implementation of the programme. Even though the controversial projections of US-based National Intelligence Council state that India would have 25 million HIV (about 5% of adult population) by 2010, it did not affect developing close links with the international community.

Overall, India's response to HIV/AIDS was successful in controlling the epidemic and it was well documented. 1 , 2 , 3 , 4 , 5 The challenge now lies in maintaining success due to the emergence of newer pandemics like COVID-19. Since 2010, many donors started modulating their allocations globally to push the transition away from reliance on external resources, especially countries where the national economy could potentially support a greater share of HIV funding. 6

Department for International Development (DFID), The United States Agency for International Development (USAID), Gates Foundation, and Global Fund all joined in this approach based on disease burden and country’s ability to increase allocations. Even though the projections of US National Intelligence Council issuing a controversial projection and Gates Foundation support them that India would have 25 million HIV (about 5% of adult population) by 2010 1 , it did not discourage developing close links with the international community. 1 As contrary to this, the estimated number of people living with HIV/AIDS in 2011 was 2.08 million.

One of the imperatives for moving towards sustainable development goals is ensuring the local ownership of the programmes and finding the relevance and appropriateness of financial envelope supporting those programmes. Over the years for several economic and political reasons, there has been growing feeling and pressure of transiting to having more share of domestic budgetary support. Ensuring that we achieve greater sustainability of our response and make sure we have predictable sources of funding, NACP during its fourth phase (2012–2017) transited from external financing in favour of domestic budgetary support. The planning and development of strategic plans for the transition from external funding to domestic support, however, was not straightforward.

The objective of this paper is to discuss the transition and examine the assumptions made during the process of developing the plan. The paper also compares and analyzes the difference between the plan and actual allocations after the transition plan was put in place. The learning may be useful to countries and other programmes which are planning such transition. We also discuss implications of this development in terms whether this change has created any critical gaps, especially for the key populations and whether the process has been transparent and predictable.

2 IHIV/AIDS Programme in India

The presence of HIV infection was first detected in India in 1986 when two doctors found about 10 HIV positive samples out of a group of 102 female sex workers from Chennai. At that time, the threat from the disease was not perceived to be high. With time and increasing surveys of blood donors, female sex workers, and injecting drug users, it became apparent that HIV infection was already present among different risk groups in India. Consequently, India embarked on with a chain of 62 AIDS surveillance centres to understand the geographical extent of the infection and identify the main routes of transmission. 7

Inception Phase AIDS Task Force under the aegis of the Indian Council of Medical Research (ICMR) was constituted to look into the HIV infection issue. The government also established a National AIDS Committee (NAC) for overall policy-making and overseeing the programme performance. Given the urgency to halt the spread of infection, the Government initiated a 3-year medium-term plan that was followed by implementation of the National AIDS Control Programme (NACP) in 1987. With the support from the WHO, NACP focused on coordinating the national response to HIV/AIDS. During this inception phase, the programme’s key focus remained on the screening of the sexually promiscuous population and blood donors. Along with these activities, the programme also carried out educational programmes to increase the awareness. Till 1992, the bulk of funds for AIDS-related projects was used for improving blood testing and surveillance facilities. The testing facilities were set up for screening transfused blood for HIV to assure the safety of donated blood and prevent HIV infection from this source. ELISA machines and HIV test kits were supplied to blood banks throughout the country.

Donor Support The background of NACP’s financing through donor support goes back to the 1980s. WHO in 1985 supported the initiative to provide support for doing research in HIV/AIDS. Immediately after this in 1987, the government started NACP. By 1989, the WHO began working with the government to implement prevention policies. The National AIDS Control Organization (NACO) was established in June 1992 for the implementation of the programme. National AIDS Control Board was constituted for approval of NACO policies, expediting sanctions and for approval of significant financial and administrative decisions. In 1992, the World Bank joined in supporting the NACP by providing a loan of $84 million. This was followed by another loan of $191 million in 1999 and government’s contribution was $14 million. The key components’ NACP focused was improving the blood supply, increasing awareness of HIV transmission, and creating State AIDS Control Societies (SACS) to help implement programme components.

The inception phase of NACP made it apparent that India is dealing with a major challenge. The broad estimates indicated prevalence more than what was expected and the incidence was growing. It was felt critical to initiate the process of developing a strategic plan. Accordingly, the first strategic plan for the prevention and control of AIDS in India was prepared for the period 1992–97, the first phase of the NACP. This phase was extended to 1999 when, in 1997, it was realized that barely half of earmarked funds had been utilized.

NACP I was the first effort in India to develop a national public health programme in HIV/AIDS prevention and control. The aims of the programme were to prevent HIV transmission, decrease the morbidity and mortality associated with HIV infection, and minimize the socio-economic impact of HIV infection. After that, the National AIDS Programme took off in full gear. NACP I was followed by NACP II (1999–2006), NACP III (2007–2012), and NACP IV (2012–2017). Each of the phases of the NACP in India had a carved out strategy, a focus and programme goals addressing preventive and curative aspects of the HIV epidemic in efforts to contain the spread of the disease.

During its several phases, NACP received technical and financial assistance from bilateral agencies, such as USAID, DFID, and AUSAID. USAID support focused on providing assistance to NGOs for targeted interventions for AIDS prevention. During the early 1990s, DFID also played a key role in providing with prevention and treatment services, and since 1999, DFID also provided funding support to NACO and the state governments. By 2002, the bulk of funding for NACO came from the World Bank, an estimated $84.2 million. The government contributed $7.8 million, and approximately $10 million came from other bilateral donors. NACO continued to strengthen its partnership with various international partners. For phase III in 2007, NACO approached the Bank for credit of $250 million dollars, a threefold increase from its earlier phase. The objective of this phase was to create a more comprehensive strategy with better coordination between NACO, SACS, and NGOs and with significant scale-up of the operations. The Global Fund to fight AIDS, TB, and Malaria, a multilateral effort started providing assistance since 2004. The Global Fund has provided grants to help mothers with HIV, PLWHA, and ARV treatment. In addition, the Global Fund also provided a grant to address the TB-HIV co-infection problem. The Gates Foundation through a private philanthropy provided $258 million for the Avahan initiative; a prevention program focused on Indian truck drivers and the six highest prevalence states in India. The Clinton Foundation in 2006 provided funding to help NACO work with nurses in small communities.

As India's partnership with the Global Fund, World Bank, and other donors progressed, NACP leveraged on this support to strengthen the programme implementation. NACO through their targeted intervention approach increased their partnership with NGOs in reaching out to female sex workers (FSW), men having sex with men (MSM), injection drug users (IDU), truckers, and migrants to strengthen the prevention effort. SACs played a pivotal role in harnessing the strength of NGOs in different parts of the country. The progressive leadership at NACO and The Government of India (GoI) also contributed to this effort.

The goals, objectives, and strategies of NACP were informed by selected guiding principles. One of them is the unifying credo of “Three Ones” which focused on (a) one agreed action framework, (b) one national HIV/AIDS coordinating authority, and (c) one agreed national monitoring and evaluation system and guided the donor engagement work in HIV/AIDS sector.

3 Financial Resource Envelope of NACP

Globally, HIV/AIDS control initiatives have demonstrated some path-breaking innovations in areas of advocacy and civil society engagement and social mobilization. The political commitment towards drug pricing, solidarity, and affordability in limited resource settings has been significant. Such initiatives would not have been possible without adequate resource planning and allocations. The programme has been able to mobilize financial resources effectively using evidence and highlighting the emerging priorities.

The externally aided component of the resource envelop of NACP progressively increased over the first three phases. The national strategy and the financial and technical assistance from the World Bank, DFID, USAID, Global Fund, and Gates were well aligned and focused on prevention and institutional capacity building. This collaboration also facilitated the decentralization process including administrative and financial management systems and partnership with Non-Governmental Organizations (NGOs) to saturate prevention interventions among the high-risk groups. The targeted interventions implemented by NGOs focusing on prevention covered weaker and marginalized sections of high-risk groups. Ensuring clean and safe blood, creating awareness and demand generation for HIV prevention services, and promotion of condoms were the key areas that the IDA credit covered under the national programme and contributed to the decline in HIV infection. While the World Bank remained an important partner, various bilateral and multilateral agencies have also entered into agreements with GoI and provided technical support to specific components of the NACP. Effective leveraging of the financial resources available from different development partners to support the national strategy enabled the national programme to strategically allocate financial resources and maximize the impact (NACP IV Strategic Plan).

Concept of Resource Envelope The total of all the sources of funding to finance various components of the programme refers to as the resource envelope. In India, the NACP programme had following elements of resource envelope:

Direct Budgetary Support (DBS) The Government's financial allocations to the central plan for financing requirements of NACP. The DBS includes the tax receipts and other sources of revenue raised by the Government. The Niti Ayog aggregates all budgetary support required by various ministries and puts forward the demand to the Finance Ministry. This request is vetted and then approved by the Finance Ministry. The HIV/AIDS, budgetary support for NACP also includes funds allocated under National Rural Health Mission (NRHM) for meeting expenditures for establishment, blood safety, condom promotion, and STD.

External Aid Component (EAC) This component of resource envelope is pool fund that provides funds to GoI thorough a mechanism of a special account in which pool fund partners deposit funds for the project. These funds are used exclusively to cover the Pool Fund Partners’ share of the eligible expenditure on the project. The Controller of Aid, Accounts and Audit (CAAA), Department of Economic Affairs, Ministry of Finance operates the special account. Based on the amount of claim raised in respect of the expenditure incurred on the project (as per the reimbursement claim filed by NACO), CAAA issues an advice to the Reserve Bank of India for transfer of the amount from the special account of the project to the Consolidated Fund of India. Pool Partners replenish the special account at regular intervals as per the agreed percentages of expenditure. This component of resource envelope includes funds received from GFATM grants (various rounds), pooled funds comprising from the World Bank, DFID, USAID, Bilateral, and The UN Development Program (UNDP). These funds are routed through the government treasury system.

Extra-budgetary Support (EBS) This refers to the financial assistance from various development partners, such as World Bank, DFID, USAID, GFATM, and Gates Foundation grants to NGO. EBS funds are directly provided by donor agencies to various implementing agencies to support technical assistance components of the programme.

Table 1 provides resource envelope of NACP for all four phases of the programme since 1992 (see Figs.  1 and 2 ).

Resource envelope of NACP in India.

DBS of NACP during various phases

The DBS component over the four phases of NACP increased from 9% in Phase II to 75% in Phase IV. The reduction in EAC of resource envelope happened along with the Global Fund, DFID, and Gates Foundation reducing their contributions to the India’s AIDS programme. For example, the Global Fund reduced the budget for the period April 2010 to March 2016 from $530 million to $420 million. Similarly, the Gates Foundation had in 2011 announced its decision to wrap up its $338 million fund programme after 2012. As a result of this, the EAC component got reduced to Rs. 1699 crores from Rs. 4148 crores in NACP III, a reduction of about 60%. These developments were in sharp contrast to the earlier patterns, wherein India was dependent to the extent of 90% on international donors. Many of these events unfolding at that time created a challenge to sustain the national response to HIV epidemic and also an opportunity for the transition.

4 Plan for Finance Transition

The timing and process of transition from donor funding vary considerably. 7 Improving economic conditions and lower disease burden may be considered a set of few factors contributing to the transition, but given the complexity of resource allocations process within the countries and the political economy of HIV/AIDS funding and issues in procurement, the predictability of transition remains less understood. The process of transition also needs to consider risks which may emanate as some of the components of the programme may not get required financing after the transition. Also, donor managed/implemented components or sub-components of the programme face risk of defunding because of mismatch/differences in budgets of government and donors for selected components. Based on the experience of NACP IV programme planning process, we present India experience of transition and possible explanation what led to the transition. These are discussed below.

Integration of Services The spread of HIV/AIDS poses complex development challenges. This epidemic mainly affects the population in their most productive years and thereby lowers productivity leading to persistence of poverty across many regions. Integration of some key components of HIV/AIDS into general health and other national programmes is considered a critical approach to manage and address the direct and indirect causes of the epidemic.

Towards the development of the strategic plan for NACP IV, a concept note in the initial stages discussed the integration strategy and its approach. Besides bringing in economies and getting a better handle on the epidemic, the integration of selected components of the programme with the National Rural Health Mission (NRHM) had the potential of providing an opportunity to leverage on resources. Over the years, India implemented the HIV/AIDS programme as a vertical programme. Vertical programmes have a separate administration, budget, and a structure. As opposed to this, the integrated programmes and responses are managed and implemented through the existing health care system and facilities. 7 The integrated programmes leverage on collective resources and are expected to generate economies. Since they operate within the general health framework, the integration is expected to address priorities of the local communities in an efficient manner and share common resources with minimum wastage. It also creates a single system for addressing long-term problems in a sustainable way by avoiding duplication of work.

The Glion Consultation on strengthening the linkages between reproductive health and HIV/AIDS and other studies 8 , 9 , 10 , 11 suggest a clear linkage between reproductive health and HIV prevention, treatment, and care. There is a need to comprehend the scope of family planning approaches globally to safeguard the reproductive options of women along with mitigating the risk of spread of HIV among women and children. The findings from these studies also suggest that integration of sexual and reproductive health care with HIV programmes helps increasing access to services and information and they are cost-effective. This approach helps in reducing sexually transmitted infections, prevention of mother-to-child transmission of HIV, unintended pregnancies, and maternal and new-born deaths. Clients seeking HIV services may have needs for family planning services, and they share common concerns. Providers can address and service the client needs more comprehensively after integration. Similarly, integrating counselling and testing for HIV into family planning at health facilities enhance voluntary counselling and testing uptake and improving the quality of care. A number of studies also highlighted the lessons from HIV integration with TB, maternal, new-born, and child health services in different settings. 8 , 9 The integration strategy also helps in mitigating the consequences of the widespread stigma and discrimination experienced by people who are at risk of or living with HIV. By ensuring the integration of planning, resources, and programming issues, mainstreaming enables a multi-sectoral and multi-stakeholder response. 6

At the time of developing the strategic plan, there was a convincing case for integration and concept notes highlighted this. At the same time, there were several examples of integration being tested in the field. As part of Avahan project, FHI operated an Astha project providing integrated STI and family planning services at their project clinics in few urban districts of Maharashtra. It was found that service uptake increased after services were integrated 9 Similarly, RISHTA Project also demonstrated a community-level intervention program on an integration of HIV and SRH services at urban slums of Mumbai. 9 Maharashtra AIDS Control Society (MSACS) in Satara district had also rolled out the prevention of parent-to-child transmission (PPTCT) programme under NRHM through the integrated testing and counselling centres (ICTCs) located at tertiary-/secondary-level government hospitals, facility-based ICTCs, and public–private partnership facilities, and shown a dramatic intake of services and counselling.

There was general acceptance towards the need for integration of selected components of NACP with the general health programmes. The NACP IV followed the strategy of integration as one of the important priorities. Among the five key priorities mentioned in the guideline of NACP IV, integration of HIV with other health programmes was adopted as an important strategy. 9 However, it was recognized that it would be possible only through phased implementation to integrate components of NACP with the existing health programmes such as NRHM or with the proposed programme National Urban Health Mission (NUHM)). 9 It was assured that the integration would be done without compromising on quality and coverage. Departments, such as (PPTCT), sexually transmitted infections (STI), Targeted Interventions (Tis), and integrated counselling and testing centers (ICTC), were identified for this purpose. The integration of National Opioid Substitution (OST) interventions with Ministry of Health, and harm reduction and social protection strategies with Ministry of Social Justice and Empowerment were also included for integration purpose. Similarly, the integration of STI care of general population, counselling and testing services, and care, support and treatment (CST) services with the general health care services were also included. In summary, the plan preparation discussion listed the following key benefits emanating from the integration strategy: (a) more efficient system for HIV/AIDS with other integrated services and better quality of care, (b) reduction in repetitive registration, (c) reduction in duplications of services, (d) reduction in stigma and discrimination, (e) greater access to integrated services at one centre rather than running for different treatments at different centres and hospitals, and (f) economies of scale that go with above-mentioned advantages, and therefore cost effectiveness.

Besides these, the integration strategy contributed to the resource augmentation as MRHM and MUHM, both having a centre and state share in implementing the programmes. NACP was centrally funded programme. Through the integration of various components of NACP, it was expected that the programme would provide an opportunity to leverage on resources from both the Centre and the State, thereby reducing the dependence on the EAC component of the budget. The transition plan was based on the integration assumption fundamentally.

Macro-economy and Fiscal Situation Changes in the macro-economic condition and relatively improving fiscal management before 2012 led to resource availability to increase the allocation of resources to NACP IV programme. The Indian economy achieved a record annual GDP growth of 8.9% in the year 2010–11. This high growth phase was also accompanied by a consolidation of key macro-economic parameters. 10 Indicator such as fiscal-deficit ratio to GDP was brought down from 6.5 to 4.3%. This had happened within the backdrop of suffering a setback with the onset of the North Atlantic financial crisis in 2008. After this crisis, growth rebounded in response to large monetary and fiscal stimuli. Moreover, a substantial widening of the current account and fiscal deficits occurred from 2008 to 2009, along with inflation climbing to an elevated level. India’s real GDP growth rebounded sharply during 2009–11. The NACP IV phase 2012–17 preparation had started in 2011, and the macro-economic conditions were also showing improving results (see Table 2 ).

There was also a view that global growth in the pre-crisis period was well-above potential and the post-crisis slowdown was a return to the underlying potential growth path, which itself was seen as below the pre-crisis potential growth rates. Potential growth of developing countries was 6.3% during 2005–07, whereas the actual growth during this period averaged two percentage points higher at 8.3%. 10

The domestic financial sector exhibited remarkable resilience to the American financial crisis, reflecting India’s prudent approach to domestic and external financial liberalization. 10 , 11 , 12 It was perhaps due to the monetary and fiscal stimulus measures that the Indian economy was among the first to recover from the crisis with growth during 2009–11 being almost the same as during the pre-crisis high growth phase 2003–08.

A number of monetary and liquidity measures led to a significant release of liquidity. For example, the effective policy rate was cut sharply from 9% in September 2008 to 3.25% by April 2009, and the cash reserve ratio was reduced from 9.0 to 5.0% over the same period. 7 On the fiscal side, the Government, inter alia, cut the central indirect tax rate from 14 to 8% between December 2008 and February 2009 and also increased plan expenditure. Reflecting these actions as well as others, the Central government’s headline gross fiscal deficit (GFD) decreased from 6.5% of GDP in 2009–10 to 4.8% in 2010–11. Thus, both monetary policy and fiscal policy provided strong support—excessive with hindsight—to the domestic economy in 2010–11. While accommodative monetary and fiscal policies promoted growth during 2009–11, the phased reversal of these policies, partial so far in the case of fiscal policy, contributed to the growth rebounding in 2009–11.

Economic growth tends to be associated with not only a higher overall level of resources but also a higher share of public resources devoted to the social sector including health. There are several reasons why the government share of health spending tends to increase with income.

Rising incomes are often associated with a greater demand for, and supply of, health care. However, despite years of strong economic growth, India’s public health expenditure did not increase until there was a strong political commitment, 11 seen post-2005–06. The central government expenditure on social services and rural development increased from 14.77% in 2007–08 to 17.39% in 2012–13. Expenditure on social services by the government also showed an increase in reflecting the higher priority given to this sector. As a proportion of the GDP expenditure on social services increased from 5.91% in 2007–08 to 6.79% in 2010–11 and further to 7.09% in 2012–13. Expenditure on health as a proportion of GDP increased from 1.27% in 2007–08 to 1.36% in 2012–13. 12 As percent of total expenditure, the expenditure on health was 4.8%, and as percent of social services expenditure, the expenditure on health was 19.2% in 2012–13. 12

The improving macro-economic parameters and relatively better fiscal conditions facilitated the development of plan with higher allocation of government budgetary support.

Health Finance The health spending, both public and private, in India is 4.02% of GDP. 7 However, public spending on health spending in India is comparatively low slightly over 1% of GDP. 13 India’s dependence on external assistance for health has traditionally been low relative to other developing countries. For example, in 2006, only about 0.7% of total health spending (public as well as private) was externally contributed. Low public health spending over the years has led to high private health spending. 13 The out-of-pocket expenditure as a percent of private expenditure on health was as high as 92.2% in 2000, which reduced to 74.4% in 2008 but is nonetheless high.

The share of total government health spending (in GDP) showed a decline from over 1.1% in 1990 to less than 0.9% in 2005. This decline was mainly on account of the decline in government health spending at the state level. The center’s share showed a marginal increase between 1990 and 2005. The year 2005, however, marked a turning point when the share of government health expenditure in GDP began to rise due to strong political commitment to increase public spending on health from about 1% of GDP to 3% of GDP by 2012. 13 In keeping with this goal, the central government increased its health spending. The total plan allocation and expenditure incurred by the Central Government for public health for the years 2007–08 to 2010–11 is shown in Table 3 .

As seen from the table above, the Government increased the plan allocation for the public health spending to Rs. 26,760 crore in 2011–12 from Rs. 22,300 crore in 2010–11 and Rs. 19,534 crore in 2009–10, respectively. India’s health budget showed an increase of 75% between the period 2007–08 and 2011–12.

Government’s resolve to increase the allocation to health sector post-2005 by which the government expenditure on public health increased and this paved the way for increased allocations to NACP and helped in drafting the transition strategy.

ARV Medication Prices Under NACP II, the focus was given on low-cost care, support, and treatment including common opportunistic infections. The free distribution of ARV medications was started in 2004. Since then, this intervention has been scaled up and, as on 31st May 2006, India had set up 54 ART centres with 33,638 patients (including 1352 children) receiving free ART at these centres. However, at that time, this covered only 10% of the estimated eligible patients needing treatment. NACP III adopted a comprehensive strategy to strengthen family and community care, provide psycho-social support to patients. The programme ensured accessible, affordable, and sustainable treatment services. It was expected that expanding CST component will not only help reduce AIDS-related mortality but also positively impact on reduction in poverty, stigma, and discrimination. Furthermore, this would have helped to achieve the objective of controlling the spread of the epidemic. The strategy included identification of institutions, strengthening referral linkages for CD4 testing, capacity building of ART teams and procurement of ARV drugs. More than 300,000 patients were receiving free ART by the end of NACP III in 2011 through approximately 250 ART centres. During NACP II and NACP III, drug prices to treat using ART remained prohibitively high. The second line of ART though available was not envisaged during phase III of the programme. It is only at the end of phase III; the second line of ART was introduced. At the time of planning of the fourth phase of the programme, the prices of both first line and second-line ARV medications had significantly come down.

India has a long history of producing generic medication and it is distributing throughout Asia. Having a strong domestic infrastructure for manufacturing medicines and after joining the TRIPS in 1995, India moderated its stand that only new drugs deemed to be “new and innovative” can be patented and sold in Indian markets. 12 For example, India’s denial to recognize the patented drug Novartis for Leukemia in January 2006 suggested that the government might follow the same for ART medication. Pharmaceutical companies, such as Cipla, Ranbaxy Laboratories, Matrix Laboratories, and Hetero drugs, all produce ARV medicine at cheap and affordable prices. India also has strong medical research institutions, such as the National AIDS Research Institute (NARI), and talented pool of scientists. Under these conditions, NACP IV planning considered and reflected that eventually India is in a good position to guarantee and provide ART medications at affordable prices, thereby reducing the burden on resource requirements. Therefore, declining prices of ARV medications reduced the overall financial burden and influenced the decision to support this component of the programme through domestic budgetary support.

High Prevention Focus in Previous Phases Focus on prevention components of the programme remained one of the core strategies of NACP implementation throughout its various phases. Table 4 presents a synoptic view of the allocation of planned resources to prevention components of the NACP in India. During NACP III, 67% of the budget was allocated to the prevention, and for NACP IV phase, it remained as high as 60%.

The HIV estimates at the time of NACP IV preparation suggested an overall reduction in adult HIV prevalence, HIV incidence (new infections), and AIDS-related deaths in India. The adult HIV prevalence at the national level had continued its steady decline from the estimated level of 0.41% in 2001 to 0.33% in 2006 to 0.27% in 2011. Similar declining trends were noted both among men and women at the national level. The estimated number of new annual HIV infections had declined by more than 50% over the past decade. It was estimated that India had approximately 116,000 new HIV infections in 2011, as against 270,000 in 2000. This was one of the most important evidence on the impact of the various interventions under NACP with scaled-up prevention strategies. This was possible due to rapid scale-up of interventions and with prevention focus, which resulted in bringing hard to reach populations into the ambit of the programme and a strong evidenced-based approach including mapping of high-risk populations.

The total number of People Living with HIV/AIDS (PLHIV) in India was estimated at around 2.09 Million in 2011. Children, less than 15 years of age, accounted for 7% (0.15 million) of all HIV infections, while 86% of infected individuals were in the 15–49 year age group. Of all HIV infections, 39% (0.82 million) are among women. The estimated number of PLHIV in India maintained a steady declining trend from 2.32 million in 2006 to 2.09 million in 2011 (Fig.  3 ). All the high prevalence states showed a clear declining trend in adult HIV prevalence.

Estimated adult HIV prevalence and number of PLHA.

High prevention focus during previous three phases of the programme was instrumental in creating lesser disease burden and, therefore, lesser financial requirement in subsequent phases.

Ownership Throughout the implementation of NACP, India remained committed reducing HIV mortality, prevalence, and new infections. By the end of NACP III, the India had made significant progress towards achieving this goal. 14 The NACP III, which had the goal of “halt and reverse” the HIV epidemic in India, made a steady decline in overall prevalence and nearly 50% decline in new infections. The NACP demonstrated the community involvement and ownership in developing appropriate strategies and in reaching out to high-risk and vulnerable populations’ works. The programme immensely benefited by the key role played by all stakeholders.

In 2010, the Supreme Court of India directed the Government to provide second line of ART to all AIDS patients in the country. Invoking Article 21 of the Indian Constitution and stating that it was an issue of the right to health, and the judiciary had warned the ministry abdicating its constitutional responsibility.

A substantial scale-up of coverage of FSW (81%), MSM (67%), and IDU (81%) through a total of around 1821 targeted interventions (TIs) for high-risk groups and bridge populations during NACP III laid down a sound foundation. The Link Worker Scheme was established to reach out to rural HRGs and their partners and vulnerable groups. Condom promotion had achieved 85% of the target of 3.5 billion through 1.2 million retail outlets and 25 social marketing organizations. The coverage of STI services has been scaled up through 1100 designated STI/RTI clinics, 4,036 preferred private providers for HRGs and CHC/PHC under NRHM. Regular screening of HRG for STI had been initiated. About 80% of an estimated 10 million units of safe blood had been achieved through blood banks of which 80% was through voluntary blood donations. Counseling and testing services were rapidly scaled up through 10,515 ICTCs and covered 88% the total target of 22 million. The program reached 8.56 million pregnant mothers and provided treatment to 13,013 infected mother–baby pairs at the time of delivery. At the end of phase III, 516,412 PLHIV were receiving ART. CST services were being provided through 355 ART centres, 725 Link ART Centres (LACs), and 253 Community Care Centres (CCC). These facilities had been set up based on increased uptake of CST services, surpassing the original NACP III targets. The program had also started providing 2nd-line ART in a phased manner, and more than 4,208 persons were receiving 2nd-line ART. The ICTC and ART centres were not stand-alone entities, but were located on the premises of facilities belonging to the larger health system. The capacities of State AIDS Control Societies (SACS) and District AIDS Prevention and Control Units (DAPCUs) had been strengthened. At National and State levels, Technical Support Units (TSUs) were established to assist in programme monitoring and technical areas. A dedicated Northeast Regional Office had been established for focused attention to the North Eastern States. State Training Resource Centers (STRC) were set up to help the state-level implementation units and functionaries. Strategic Information Management System (SIMS) had been established, and nation-wide rollout was under way with about 15,000 reporting units across the country. The next phase of NACP, therefore, was ready to be planned on these achievements, huge ownership, and ensure that these gains are consolidated and sustained. 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21

NACP V strategic plan started building on the motivation of these stakeholders, particularly at the community level (NGOs, social activists, service providers, consumers, and policymakers) to engage actively with complex issues of HIV with complete ownership. Funding from Development Partners had played a significant role in supporting the NACP programme interventions in building this ownership. During NACP III, external resources were substantial. In the coming years, the programme strategized to be primarily funded through domestic resources. This was expected to give greater impetus to the need to move towards more effective and efficient integration approaches in the next phase of programme implementation.

5 NACP IV Implementation Challenge and Lessons

The NACP IV and financing transition plan was based on a set of assumptions discussed in the previous section. However, these were fraught with some risks and changes that may take place as implementation unfolds. In this section, we discuss how the NACP IV implementation unfolded and what is the way forward. 22 , 23 , 24 , 25 , 26

Budget Allocations and Actual Expenditure NACP IV experienced a significant reduction in actual allocations as compared to what was originally budgeted. Only 67% of the plan approved amount of Rs. 11,394 crore (2012–17) was allocated to the programme. Of the approved amount, Rs. 5679 crore was spent which is nearly 91% of allotted amount in last 4 years (2012–2016). The scheduled start date for NACP IV was April 1, 2012. There was a delay in obtaining of various clearances and approval of NACP IV and it was formally launched in February 2014. As a result, many of the key initiatives and innovations planned under NACP IV could not be started for almost 18 months. This adversely affected the resource availability, and funds’ allocation was also not according to the approved plan. In a 5-year programme, the initial 2 years are critical to establishing the operational guidelines and strategic directions but, unfortunately, both regarding the allocation of funds and implementation timelines, NACO suffered a major setback; see also Fig.  4 . (See Table 5 )

NACP IV budget and actual expenditure.

The following important points can be highlighted from above data: (a) original budget as per the strategic plan developed was Rs. 146 billion, (b) EFC approved budget was 92% of the strategic plan budget, (c) the budget without Extra-Budgetary Support (EBS) was Rs. 113.94 billion which was 85% of EFC approved budget, (d) budget allocation for NACP IV was finally Rs. 76.72 billion which was 67% of the Government budget, and (e) the expenditure is Rs. 73.43 billion which is 96% of total allocated amount. The NACP IV could not maintain the promised budget allocations and only 67% of government budget was allocated. The year-wise situation exhibits the same pattern (see Fig.  5 ).

Year-wise NACP IV budget and actual expenditure.

It may also be noted that macro-economic parameters dwindled after 2011–12 as the GDP growth rates declined from a high of 9–4.9% during 2013–14 (see Table 6 ).

During the implementation of NACP IV, the fund flow mechanism also created some impediments in the smooth functioning of the programme. The decision to route funds through the state treasury mechanism resulted in yet another setback for NACP IV. Because of inordinate delays in accessing funds, the administration response slowed down the pace of programme implementation in several states. See Table 7 for NACP targets and achievements as of 2015–16. As a consequence, many interventions got affected because of the slowdown of programme interventions and leaving of trained healthcare providers from the system. This adversely impacted the programmatic coverage and outcomes. Recently, NACO has been allowed to directly fund the State AIDS Control Societies (SACS).

Taking account of the actual allocation of resources to NACO, systemic delays, achieving the global targets and the unfinished agenda, there is need to rework on the targets which are yet to be achieved and set a revised plan as well as the timeline. A more careful fiscal management system as recommended in the mid-term appraisal is critical at the national, state, and district levels to maximize the effort and reaching the targets. Also, NACO needs to think of innovative resource mobilization. Now, it is the time to establish and create an appropriate mechanism at the national level, which can be used as a buffer fund to mitigate risks such as budget cuts, any unforeseen issues, etc. Any economy planning for the resource transition needs to consider setting-up of creating such mechanisms. NACO needs to leverage the extra-budgetary support to harmonize the efforts regarding partnerships with private sector and public sector units. 27 , 28 , 29 , 30 , 31 , 32

NACO needs to focus all the efforts in revitalizing the interventions and improving the pace of programme implementation. In addition, there is need to ensure highest quality and effectiveness in all interventions. To facilitate this, NACO has to ensure adequate funds availability, timely transfer of resources to states, set-up new service delivery points where required and strengthen on-going interventions, and develop capacities of health care providers. 7 , 33 , 34 , 35

Mathematical Modeling For the first in India, it was decided to build localized mathematical models for HIV/AIDS that utilize the information collected on various parameters and transmissions dynamics explained in previous sections. Such an exercise was done during NACPII when two of the co-authors of this article (K. Sudhakar and Arni S.R. S Rao) served as the World Bank consultants. Later during the NACPIII period 2006–2011, it was decided by NACLPIII team members (K Sudhakar and T Kurien) to invite Arni S.RS Rao to lead and to collaborate on the mathematical modeling efforts for the national HIV/AIDS response in India.

The success of our AIDS modeling efforts and their utilization by the Government of India and NACO during the third and fourth phases of planning were well documented. 5 , 36 , 37 , 38 , 39 This is the first time, mathematical models were built for national health planning since the independence of India in 1947. However, statistical data collection and related methods were applied in several other situations in national planning in India. 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 Modeling HIV/AIDS for Indian scenario was also conducted using modeling packages and useful conclusions were drawn; see for example. 46 , 47 , 48 , 49 , 50 , 51 , 52 For a successful mathematical, the associated data and parameter estimations are essential. Several HIV/AIDS studies of India provided a rich set of data that helped to fit the models, and for fine calibrations, see for example. 5 , 42 , 44 , 47 , 48 , 49 , 50 , 53 , 54 , 55 , 56 , 57 In addition to the transmission dynamics models, spread dynamics of HIV in India, there were successful models for cost–benefit analysis and related modeling that assisted in budget preparations; see for example. 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66

India became one of the few countries in the world, where localized mathematical models were successfully built, tried, and adopted, and this has paved the way for other models in India and outside to try such exercises for their own populations for several other epidemics, such as avian influenza, swine flu, etc.,

The Novelty of the Indian HIV/AIDS Model We have developed a transmission dynamics model that considers all possible modes of transmissions within India that were agreed upon by experts during the mid-2000s. Since the modeling was done with experts from the disciplines of mathematics, medicine, public health, and economics, it was made as much as comprehensive as possible to accommodate NACP II and NACP III interventions. Later, the same models were used to understand the impact of first-line and second-line ARTs in India. 67 In addition to the comprehensive spread models, we also build transmission dynamics among two sub-groups, namely, the transmission among MSMs, and IDUs. Refer to 5 for the details, and the parameter estimations. A brief description of our models was explained below:

The general HIV transmission dynamics model for the adults in India had four compartments \(X:\) susceptible, \({Y}_{1}:\) iSTD infected (other than HIV), \({Y}_{2}:\) HIV infected, and, \(Z:\) AIDS and described in the system of Eq. ( 1 )

In model (1), \(r, \phi , \mu , \delta ,\) and, \(\gamma\) are positive constants, and the values of the parameter spaces \({\Theta }_{1},\) \({\Theta }_{2}\) , \({\Theta }_{3}\) , and, \({\Theta }_{4}\) are positive. The four functions \({f}_{1}, {f}_{2},\) \({f}_{3}\) , and, \({f}_{4}\) specify transmission functions from \(X\) to \({Y}_{1}\) , growth in \({Y}_{1}\) , from \({Y}_{1}\) to \({Y}_{2},\) and, from \({Y}_{2}\) to \(Z\) , respectively. The quantities \(r\) describe the growth rate within \(X,\) \(\phi\) is the recovery rate of STDs, \(\mu\) and \(\delta\) are death rates among STDs (other than HIV), and HIV/AIDS, respectively, and, \(\gamma\) is the rate of disease progression from HIV to AIDS. The sub-model for MSMs was developed similar to the model equations in ( 1 ) with MSMs related to four population compartments and parameters. The sub-model for the spread among IDU is described using the system of equations in ( 2 )

The parameters and variables in ( 2 ) are having similar descriptions as in ( 1 ) but for IDU populations. All three models were considered separately for males and females. Also, the age-specific structures were considered without violating the model structures of ( 1 ) and ( 2 ). In the age-structure model, any infected with STDs or HIV could transmit the virus/infection to any other age individual.

Disease progression parameter \(\gamma\) was estimated using a likelihood equation \(L\) using the reported AIDS cases over several years, and constructing the conditional multinomial probabilities. 5 There were other assumptions and models were tried for Indian disease progression parameters; see for example. 68

Suppose \({R}_{1}, {R}_{2},\dots ,\) \({R}_{k}\) are reported AIDS cases over \(k\) -years, then the conditional probability is obtained as

for the \(j{\text{th}}\) sub-group of the model, and for \(i = 1,2, \ldots ,k.\) The likelihood \(L\) is given by

The likelihood function is maximized to obtain disease transmission parameter for the each sub-group.

The model predictions those were provided in 2007 for the NACPIII during 2006–2011 were found to be closer to the actual HIV numbers reported for the period. 37 , 38 , 39

Integration Experience NACP envisaged integrating the response to many components of the programme with the larger health system. As per the mid-term appraisal, all the service delivery units except targeted interventions have been set up within the government health system. The evaluation suggests that the work has remained limited to the development of joint guidelines for management of STI/RTI, setting-up of integrated ICTCs. Integration was expected to generate economies of scale and leverage on common funding. However, there is no evidence of this experience generating any benefits. The experience suggests that integration challenge is fraught with several challenges and inter alia; they include: (a) coordination and management of all the programmes and services under the same umbrella and streamlining the priorities, (b) preparation of strong guidelines for service delivery which should be adhered by different departments of health, and (c) the shortage of trained health workers at different levels having multidimensional skills and expertise. However, this could have been overcome by providing better incentive and proper skill building training for integrated service approach.

Establishing and maintaining a better Health Information Management System (HMIS), supportive governance, fund availability, and a strong managerial leadership are highly required for the success of integrated service approach. Many of these fell short of actual play on ground level. Even though the condom promotion component has recently been merged with the general health, there have been suggestions, however, to keep the supply of condoms to TI with NACO/SACS. Similarly, there has been no effort on developing operational guidelines for condom promotion, HIV-TB coordination, and blood transfusion services in post-integration set-up.

For any integration strategy, a transition plan on the mechanism and modalities need to be developed in consultation with the integrating departments. This needs to be developed at a fast pace, so that smooth transition can be implemented. For the next phase of NACP, it is suggested that the programme develops an outline and new model with a programme design that should focus on modifications and strengthening of monitoring and evaluation aimed at achieving the goals of integration in full. The plan must include a new type of management structure, more functionally oriented and accountable for outcomes.

HIV Epidemic Situation: Current Status The epidemic is concentrated in key populations including people who inject drugs (PWID), transgender people (TG), MSM, FSW, and their clients. HIV prevalence is in general higher in PWID, TG, and MSM than in FSW. Prevalence in FSW has declined, but pockets of high HIV concentration remain. In India, the epidemic has stabilized with declining new HIV infections. There has been a 32% reduction in new infections from 2007 to 2015. AIDS-related deaths have also decreased by 54% in this period, largely because of the significant scale-up in ART and better survival of PLHIV. Given the reduction in budget, we can say whether the declining trend of infection can be maintained. The effect of budget cuts will get reflected with a lag and as and when new data gets generated. At the sub-national level, the epidemic trends and vulnerabilities vary considerably across the country and districts. Keeping in view the variations in socio-economic and cultural situations across geographical areas, the HIV situation and public health response must be examined and location specific solutions need to be identified. Modes of transmission of HIV vary across India because of differences in risk behavior and vulnerabilities and the size of key populations (KPs) at higher risk of HIV infection.

The epidemic in southern states continues to be driven by sexual transmission as they have the largest MSM, TG, and FSW populations in the country. Latest data from IBBS 2014–15 show that HIV prevalence in these groups was high at 10.1% and 4.9% among MSM in Andhra Pradesh and Maharashtra, respectively. It was 7.4%, 6.3%, and 5.8% among FSW in Maharashtra, Andhra Pradesh, and Karnataka, respectively. The main drivers of the epidemic in the southern states are unsafe sexual behavior, especially low levels of consistent condom use by TG, MSM, and FSW. Consistent condom use is particularly low by members of these KPs with their spouses and/or regular partners, though condom use with paid partners is also unsatisfactorily low as shown by IBBS 2014–15. Various unprotected sexual practices among KPs and their intimate partners categorized under ‘bridge population’ (i.e., migrants and truck drivers) and general population (i.e., spouses and regular partners), including relatively high levels of anal sex without consistent condom use, contribute significantly to spreading the virus beyond hotspots where risk is highly concentrated.

Instead, in north-west, central, and north-east regions, unsafe injecting behavior among PWID involving the sharing of unsterile needles and syringes is the main mode of transmission of HIV. This risk behavior is also associated with unprotected vaginal and anal sex. Transmission of HIV from men who visit FSW, especially migrants, and from male injecting drug users to their spouses or regular partners is also an important route of HIV transmission that cannot be neglected.

Other Challenges and Way Forward There have been concerns about the monitoring and evaluation of the processes to improve the quality and effectiveness of the programme. The scope and size of the monitoring and evaluation could not keep pace with the demands and requirements and concerns were raised that it needed strengthening. The structural reforms to ensure direct reporting, better inter-divisional coordination with NACO and an intensified and critical role in reviewing the programmes particularly in the poorly performing states/districts and facilitate the improvement in quality and outcomes remained high on the agenda.

Given that we had more devolution of finances to states now, it is an appropriate time to look forward to developing next phase of the programme based on centre-state sharing of finances to overcome budget constraints. For some components, which are under national health mission, there is already a mechanism for sharing the resources. This will be important to create ownership at the state level. To encourage shared responsibility, the states particularly the developed States may be requested to contribute over and above to their allotted budget of central government. Also, as a result of financial devolution, the states have got higher central allocations a part of this increase is expected to lead to higher allocations to the health sector in particular. Given the programme moves to largely domestic support, the programme should introduce the budget tracking system to ensure that the donor exit does not create any void in programme implementation in future.

It is important to understand that donor funding provided flexibility with the programme implementation particularly for components, which had significant civil society and private sector interaction. To ensure we preserve what created success, the programme plans need to focus on ensuring that they are there and the programme does not suffer. The donor funds having a significant focus on civil society and human rights issues should not get diluted. Given the HIV Act now in place, a strong monitoring system at NACO needs to be created to ensure that the transition has not diluted some of the social issues. One important condition of transitioning is creating predictability. During the NACP IV, it has either got diluted, or allocations have been reduced. This has created more uncertainty affecting the programme performance.

Building on the experience gained in strategic planning, innovative financing, and mathematical modeling over the past 3 decades, a systematic approach could be institutionalized to strengthen the public health response. Using the programmatic information and data collected from different parts of the country and observing the evolving trends in the key parameters of the program, mathematical modeling exercise can be conducted periodically at national and sub-national levels to make predictions and develop estimates which will be of invaluable help in developing appropriate strategic plans and in successful implementation of public health programmes.

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Bhat, R., Sudhakar, K., Kurien, T. et al. Strengthening India’s Response to HIV/AIDS Epidemic Through Strategic Planning, Innovative Financing, and Mathematical Modeling: Key Achievements over the Last 3 Decades. J Indian Inst Sci 102 , 791–809 (2022). https://doi.org/10.1007/s41745-022-00331-y

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Augmenting progress on the elimination of vertical transmissions of HIV in India: Insights from Spectrum-based HIV burden estimations

Roles Conceptualization, Formal analysis, Methodology, Writing – original draft

* E-mail: [email protected]

Affiliation National AIDS Control Organization, Ministry of Health and Family Welfare, New Delhi, India

Roles Conceptualization, Project administration, Writing – review & editing

Roles Project administration, Writing – review & editing

Roles Data curation, Formal analysis

Roles Data curation

Affiliation Indian Council of Medical Research, National Institute of Medical Statistics, New Delhi, India

Roles Data curation, Formal analysis, Project administration

Roles Writing – review & editing

Affiliation All India Institute of Medical Sciences, New Delhi, India

Affiliation Indian Council of Medical Research, National AIDS Research Institute, Pune, India

Affiliation Indian Council of Medical Research, National Institute of Epidemiology, Chennai, India

Affiliation Postgraduate Institute of Medical Education and Research, Chandigarh, India

Affiliation Indian Council of Medical Research, National Institute of Cholera and Enteric Diseases, Kolkata, India

Affiliation Regional Institute of Medical Sciences, Imphal, India

Affiliations Indian Council of Medical Research, National Institute of Medical Statistics, New Delhi, India, Indian Council of Medical Research, New Delhi, India

Affiliation Institute of Medical Sciences, Banaras Hindu University, Varanasi, India

Affiliations Indian Council of Medical Research, New Delhi, India, PD Hinduja Hospital and Medical Research Center, Mumbai, India

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• Pradeep Kumar, 
• Chinmoyee Das, 
• Udayabhanu Das, 
• Arvind Kumar, 
• Nidhi Priyam, 
• Varsha Ranjan, 
• Damodar Sahu, 
• Sanjay K. Rai, 
• Sheela V. Godbole, 

• Published: August 9, 2023
• https://doi.org/10.1371/journal.pgph.0002270
• Reader Comments

The government of India has adopted the elimination of vertical transmission of HIV as one of the five high-level goals under phase V of the National AIDS and STD Control Programme (NACP). In this paper, we present the data from HIV estimations 2021 for India and select States detailing the progress as well as the attributable causes for vertical transmissions. The NACP spearheads work on mathematical modelling to estimate HIV burden based on the periodically conducted sentinel surveillance for guiding program implementation and policymaking. Using the results of the latest round of HIV Estimations in 2021, we analysed the mother-to-child transmission (MTCT) during the perinatal and postnatal (breastfeeding) period. In 2021, overall, around 5,000 [3,000–7,800] vertical transmissions were estimated nationally with 58% being perinatal infections and remaining during breastfeeding. MTCT at 6 weeks was around 12.95% [9.45–16.02] with the final transmission rate at 24.25% [18.50–29.50]. Overall, 57% of vertical transmissions were among HIV-positive mothers who did not receive ART during pregnancy or breastfeeding, 19% among mothers who dropped off ART during pregnancy or delivery, and 18% among mothers who were infected during pregnancy or breastfeeding. There were significant variations between States. Depending upon the States, the programme needs to focus on the intervention domains of timely engagement in antenatal care-HIV testing-ART initiation as well as programme retention and adherence support. Equally important would be strengthening the strategic information to generate related evidence for inputting India and State-specific parameters improving the MTCT-related modelled estimates.

Citation: Kumar P, Das C, Das U, Kumar A, Priyam N, Ranjan V, et al. (2023) Augmenting progress on the elimination of vertical transmissions of HIV in India: Insights from Spectrum-based HIV burden estimations. PLOS Glob Public Health 3(8): e0002270. https://doi.org/10.1371/journal.pgph.0002270

Editor: Julia Robinson, PLOS: Public Library of Science, UNITED STATES

Received: March 27, 2023; Accepted: July 17, 2023; Published: August 9, 2023

Copyright: © 2023 Kumar et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The data informing the burden estimations are available from NACO on request from Dr. Chinmoyee Das ( [email protected] ), Head of Division, Strategic Information, National AIDS Control Organisation, Ministry of Health & Family Welfare, Government of India. Access will be granted dataset as per the data sharing guidelines available on NACO's website ( http://naco.gov.in/ ).

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

United Nations envisages ending the AIDS epidemic as a public health threat by 2030 as one of the targets (Target 3.3) under the third Sustainable Development Goal (SDG) of ensuring healthy lives and promoting well-being for all at all ages [ 1 ]. Elimination of vertical transmission of HIV (EVTH), reflected by the global HIV response in its pledge to zero new HIV infections, zero AIDS-related deaths and zero HIV-related discrimination, is integral to the attainment of target 3.3 [ 2 , 3 ]. The elimination of vertical transmission of HIV has been defined in scientific terms. World Health Organization (WHO) has released specific guidance periodically to measure the progress on EVTH. Attainment of a population case rate of new paediatric HIV infections due to vertical transmission of ≤50 cases per 100 000 live births and mother-to-child-transmission (MTCT) rate of HIV of <2% in non-breastfeeding populations OR <5% in breastfeeding populations are two impact targets for EVTH [ 4 ].

There has been significant progress on EVTH. As of November 2021, WHO has validated fourteen countries/territories including Cuba, Thailand, Belarus, Armenia, Anguilla, Montserrat, Cayman Islands, Bermuda, Antigua and Barbuda, St Christopher and Nevis, Malaysia, Maldives, Sri Lanka and Dominica for EVTH [ 4 ]. The annual vertical transmissions between 2010 and 2021 have decreased by fifty per cent. Still, with around 160,000 (110,000–230,000) vertical transmissions in 2021, progress on EVTH is far from satisfactory [ 5 ].

India, the second largest HIV epidemic with an estimated 2.4 million [1.99–2.90 million] people living with HIV (PLHIV) in 2021, is critical to the global AIDS response [ 6 ]. Being committed to the attainment of ending AIDS as a public health threat by 2030, the Government of India has adopted new strategies and targets under phase V of the National AIDS and STD Control Programme (NACP Phase-V) [ 7 ]. NACP Phase-V has five top-level goals and 23 output/outcome targets to anchor the national HIV response till 2025–26. EVTH is explicitly stated as Goal 3 of NACP Phase-V.

Efforts to prevent and eliminate vertical transmission of HIV under NACP are not new. Direct interventions for the prevention of vertical transmission of HIV in India were initiated as early as 2002 [ 8 , 9 ]. The focus gradually shifted to attain elimination of vertical transmission by 2020 as one of the priorities areas under NACP through four-pronged strategies of primary prevention of HIV, prevention of unintended pregnancies, prevention of vertical transmission, and care, support, and treatment of women living with HIV (WLHIV) and her children. As a result of the focus on primary preventions under NACP with new infections declining by more than 80% since the peak, the case rate of vertical pediatric HIV infections declined to 24 per 100,000 live births in 2021. MTCT rate, reflecting the treatment coverages among HIV-positive pregnant and breastfeeding women, declined from ≥ 40% in 2010 to 24% in 2021. Still, NACP has a long way to go to attain the target MTCT rate of <5% for the elimination of paediatric new infections [ 6 , 9 ].

MTCT rate under NACP of India is calculated using UNAIDS recommended Spectrum Model. This is consistent with global recommendations to estimate the population-level MTCT rate [ 4 ]. To better understand the vertical transmission of HIV in India, we present the first disaggregated estimates of the vertical transmission of HIV acquired during pregnancy, delivery and breastfeeding in India. We provide this estimate not only for the national level but also for the high HIV burden States (either PLHIV size of ≥ 50,000 PLHIV or adult HIV prevalence of ≥1%) increasing the granularity of analysis for informing the tailored policy-making and interventions designed to augment the progress on EVTH under NACP in India.

Ethics statement

For the present analysis, we used aggregated deidentified outputs of HIV Estimations 2021 to quantify the vertical transmissions during different phases of motherhood. HIV burden estimations under the NACP of India are undertaken periodically and are the outcome of robust epidemic monitoring techniques implemented through an institutionalised mechanism of Surveillance & Epidemiology informing policy-making and programmatic improvements [ 10 ]. The institutions involved in primary data collection through periodic HIV sero-surveillance submit their proposals for the surveillance program using globally recommended methods to their respective ethics committees to seek approval on the informed consent forms. The survey at each site is initiated after the approval of the local ethics committee. The epidemic data thus generated, along with programmatic data, is used for HIV burden estimations by employing the Spectrum model, developed by Avenir Health, UNAIDS and partners [ 11 ]. As this study used aggregated de-identified outputs generated through the HIV Estimations 2021 model, ethical approval was not required.

MTCT estimation under Spectrum

The details of the process and method for the HIV burden estimations through Spectrum, used by 170 countries representing 99% of the global population, have been described elsewhere [ 12 – 18 ]. The model assumptions are reviewed and updated periodically by the multi-disciplinary UNAIDS reference group on Estimates, Modelling and Projections.

In brief, country teams input demographics, programmatic and HIV prevalence data among 15–49 years old in the model. The model transforms prevalence trends into incidence trends based on the inputted data about antiretroviral therapy (ART) coverage and assumptions about CD4 progression and survival on and off ART. The incidence estimates are then distributed by age and sex based on the community-based survey data or the epidemic type and then progressed over time to death depending upon coverage of the ART programme.

BW t = the number of births occurring among WLHIV in year ‘t’; W a,t = the number of WLHIV of age ‘a’ at time ‘t’; TFR t = the total fertility rate at time ‘t’, and; ASFR a,t = the percentage of life time births that occur to women of age ‘a’ at time ‘t’

The transmission probabiliby in Spectrum model vary by each of the prophylaxis/treatment group ( Table 1 ) and are based on the expert review of available studies [ 16 , 22 ]. In the model, the risk of vertical transmission is highest when the HIV infections in women occus while pregnant or breastfeeding (incident infections). The probability of vertical transmission with incident infections during pregnancy is estimated at around 18%, and 27% for those occurring during breastfeeding. WLHIV who were on antiretroviral therapy prior to pregnancy have the lowest peripartum and postnatal transmission probabilities; 0.26% for peripartum and 0.02% per month of breastfeeding, respectively.

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https://doi.org/10.1371/journal.pgph.0002270.t001

In the model, the children infected due to vertical tranmission would move into the subsequent age group based on age when they were infected and if they received any treatment [ 16 , 22 ]. For the children estimated to have been infected perinatally but not put on ART, the median survival is less than two years. For the postnatal infections, the median longevity without ART ranges between 6 years to 14 years depending on the age at which infection occurs [ 23 ].

Among children living with HIV (CLHIV) who are getting the treatment, the annual AIDS-related mortality is informed by the International Epidemiological Databases to Evaluate AIDS (IeDEA) Consortium. CLHIV are also subjected to background mortality. When the CLHIV reaches the age-group of 5 years, they are distributed by CD4 category based on the IeDEA data. At age 15, CLHIV transition from the CD4 count categories associated with children 5–14 to the adult HIV states.

MTCT-estimations related data inputs under the NACP of India

Periodic HIV burden estimations using Spectrum under the NACP of India is a practice since long [ 24 – 29 ]. Subnational Spectrum files, one file for each of the State/Union Territory (UT), are created for each round given the availability of the demographic, surveillance and programmatic data with epidemic starts year set at 1981 in each of the models. The inputted data includes ASFR since 1981 based on the Sample Registration System.

ART/prenatal prophylaxis coverage among pregnant WLHIV is inputted as zero before 2004 and then entered for single dose Nevirapine till 2012. For 2013, the coverage is entered for Option B (triple prophylaxis from 14 weeks). From 2014 onwards, the data is entered for Option B+ for ART started before and during the current pregnancy. Data entered on ART/prenatal prophylaxis coverage is specific to State/UT as reported in the NACP information system.

Retention on ART among pregnant WLHIV is kept as the default value of 85% for WLHIV on ART before the current pregnancy and at 80% for WLHIV put on ART during the current pregnancy across all State/UT-model. The data on ART/postnatal prophylaxis coverage for WLHIV identified during the breastfeeding period is not inputted given the lack of data on the same. Data on breastfeeding patterns among WLHIV is entered as same as that of HIV-negative women, specific for each State/UT, as informed by the rounds of the National Family Health Survey.

The model estimates vertical transmission separately for the peripartum (in utero and intrapartum) and postnatal (breastfeeding) period. The peripartum transmission probabilities, depending upon the on or off prenatal prophylaxis or ART regimen type, are applied to all deliveries among WLHIV to estimate the peripartum infections. The postnatal transmission probabilities, separate for the on or off prenatal prophylaxis or ART regimen type, are monthly probabilities applied to breastfeeding WLHIV during the whole of the breastfeeding period. Transmission due to incident infections during pregnancy or breastfeeding is modelled as a one-time risk. For all States/UTs models, default MTCT probabilities provided in the Spectrum model were used in HIV Estimations 2021 as in the previous rounds (see Table 1 ).

The Spectrum provides an exhaustive list of epidemiological indicators, adult as well as pediatric, including the number of people living with HIV (PLHIV), new HIV infections, AIDS-related deaths etc as an output of the modelling process. We present the analysis of vertical transmission by timing (prenatal or during breastfeeding) and by ART status (on or off prophylaxis or ART). The analysis includes the data for India and the high HIV burden States (either PLHIV size of ≥ 50,000 PLHIV or adult HIV prevalence of ≥1%) comprising Andhra Pradesh, Bihar, Delhi, Gujarat, Karnataka, Madhya Pradesh, Maharashtra, Manipur, Mizoram, Nagaland, Odisha, Punjab, Rajasthan, Tamil Nadu, Telangana, Uttar Pradesh and West Bengal. Table 2 summarizes the key characteristics of the States selected for the analysis [ 29 , 30 ].

https://doi.org/10.1371/journal.pgph.0002270.t002

Overall, around 5 thousand new HIV infections were estimated to happen as a result of vertical transmission during the peripartum (in utero and intrapartum) and the postnatal (breastfeeding) period in India in 2021 ( Table 3 ). This included around 950 infections in Bihar, 600 each in Uttar Pradesh and Maharashtra, 400 in Andhra Pradesh, 325 in Karnataka, 200 each in Telangana and Odisha, 150 in Gujarat and Manipur each, 120 each in Delhi, Nagaland and Rajasthan and 100 in West Bengal. In the States of Madhya Pradesh, Mizoram, Tamil Nadu and Punjab, around 60–90 new infections were estimated to happen because of vertical transmission.

https://doi.org/10.1371/journal.pgph.0002270.t003

Nationally, the MTCT rate was at around 13% at 6 weeks in 2021. The estimated MTCT rate at 6 weeks was ~22% in Manipur, 20% in Bihar, ~18–19% in Nagaland and Odisha, ~13–16% in Delhi, Uttar Pradesh and Maharashtra and ~10–12% in Telangana, Mizoram, Karnataka, and Andhra Pradesh. In West Bengal, Gujarat and Madhya Pradesh, the estimated MTCT rate at 6 weeks ranged between >6% to <9% while in Punjab and Tamil Nadu, it ranged between >5% to <6%.

The final MTCT transmission rate, including the breastfeeding period, was estimated at around 24% nationally in 2021. The final transmission rate was more than 30% in Bihar, Delhi, Manipur, Nagaland, and Odisha. It was between 22–28% in Maharashtra, Mizoram and Uttar Pradesh and between >15–20% in Andhra Pradesh, Karnataka, West Bengal, Telangana and Madhya Pradesh. The final MTCT rate was between 10–15% in Rajasthan, Gujarat and Punjab and less than 10% in Tamil Nadu.

Nationally, out of the total estimated 5,000 vertical transmissions in 2021, around 58% were estimated to happen during peripartum and rest during the breastfeeding period (Figs 1 , 2 and Table 4 ). Overall, around two-fifth (40%) of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy followed by around 12% among WLHIV who dropped off ART during pregnancy and another 4% among incident cases during the pregnancy. Around 17% of the total estimated vertical transmissions were attributed through breastfeeding among WLHIV who did not receive ART during breastfeeding followed by 15% among mothers who were incident cases during the breastfeeding period. Another 7% of the total estimated infections were postnatal infections among WLHIV who dropped off ART.

https://doi.org/10.1371/journal.pgph.0002270.g001

https://doi.org/10.1371/journal.pgph.0002270.g002

https://doi.org/10.1371/journal.pgph.0002270.t004

In Andhra Pradesh, sixty per cent of total estimated vertical transmissions in 2021 were transmission during the peripartum period (Figs 1 , 2 and Table 4 ). Overall, around two-fifth (39%) of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy followed by around 17% among WLHIV who dropped off ART during pregnancy and another 2% among babies whose mothers were incident cases during the pregnancy. Around 16% of the total estimated vertical transmissions were infections during the breastfeeding period among WLHIV who did not receive ART during breastfeeding followed by 10% among HIV-positive mothers who dropped off ART during breastfeeding. Another 9% of vertical transmission was among incident HIV infections during the breastfeeding period.

In Bihar, fifty-two per cent of total estimated vertical transmissions were attributed during the peripartum period. Overall, slightly less than half (46%) of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy. Almost 27% of the total estimated vertical transmissions were infections during the breastfeeding period among WLHIV who did not receive ART during breastfeeding followed by another ~19% transmission during the breastfeeding period among mothers who were incident cases.

In Delhi, slightly more than half (52%) of total estimated vertical transmissions were transmission during the peripartum period. Overall, around 39% of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy followed by around 19% during breastfeeding among WLHIV who did not receive ART during breastfeeding. Another ~22% transmission was during the breastfeeding period among mothers who were incident cases during breastfeeding and ~8% were during peripartum transmission among WLHIV who dropped off ART during pregnancy.

In Gujarat, almost 26% of the vertical transmission was peripartum transmission among WLHIV who dropped off ART during pregnancy followed by around 21% transmission during the breastfeeding period among mothers who were incident cases during breastfeeding. Around sixteen per cent of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy. Another 15% of HIV-positive mothers who dropped off ART during breastfeeding.

In Punjab, slightly more than two-fifths (~43%) of the vertical transmission was peripartum transmission among WLHIV who dropped off ART during pregnancy. Another ~20% were transmission during the breastfeeding period among HIV-positive mothers who dropped off ART during breastfeeding. Around 15% of the estimated vertical transmission was during the breastfeeding period from mothers who were incident infections during breastfeeding.

In Tamil Nadu, more than half (53%) of the vertical transmission was peripartum transmission among WLHIV who dropped off ART during pregnancy. Another 19% were transmission during the breastfeeding period among HIV-positive mothers who dropped off ART during breastfeeding. Around 12% of the estimated vertical transmission was during the breastfeeding period from mothers who were incident infections during breastfeeding.

In Telangana, fifty-seven per cent of total estimated vertical transmissions happened during the peripartum period. Overall, almost one-third (33%) of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy. Another 18% were estimated to be peripartum infections among WLHIV who dropped off ART during pregnancy. Around 16% of the postnatal infections were among WLHIV who did not receive ART during breastfeeding followed by 12% among those who dropped off ART during breastfeeding. Around 10% were postnatal infections among women who were incident cases.

In Uttar Pradesh, almost half (51%) of the total estimated vertical transmissions happened during the peripartum period. Overall, almost two-fifths (39%) of total infections were peripartum infections among WLHIV who did not receive ART during pregnancy while another 22% were postnatal infections among WLHIV who did not receive ART during breastfeeding. Another ~18% were postnatal infections among women who were incident cases.

In West Bengal, slightly less than half (46%) of the total estimated vertical transmissions happened during the peripartum period. Almost 40% of the total vertical transmission was perinatal transmission among WLHIV who were either not at all on ART during pregnancy or dropped off ART after initiating. Around 21% of the total estimated vertical transmissions were among incident cases during the breastfeeding period followed by another 15% among WLHIV who dropped off ART during breastfeeding.

Discussions

The goal of eliminating mother-to-child transmission of HIV is integral to India’s commitment of achieving ending AIDS as a public health threat by 2030. With an overall national-level MTCT rate of 24% against the target of ≤ 5% being a breastfeeding population, it is evident that the country has to intensify the interventions, tailored to the local contexts, to accelerate the progress on the elimination of vertical transmission. This paper analyses the data from HIV estimations 2021 by States detailing the progress as well as the attributable causes for vertical transmissions.

Overall, around 95% of the total vertical infections in India are among three broad categories: 57% among HIV-positive mothers who did not receive ART during pregnancy or breastfeeding, 19% among mothers who dropped off ART during pregnancy or delivery, and 18% among mothers who were infected during pregnancy or breastfeeding. However, there are stark differences between States.

At least two-thirds of vertical transmission in Bihar, Maharashtra, Manipur, Nagaland and Odisha were among HIV-positive mothers who did not receive ART during pregnancy or breastfeeding. Andhra Pradesh, Delhi, Karnataka and Uttar Pradesh were other States where more than half of the vertical transmission were among HIV-positive mothers who did not receive ART followed by 40—<50% in Mizoram and Telangana.

Timely engagement in antenatal care (ANC), HIV testing and ART initiation are key intervention domains for responding to the missed opportunities of identifying HIV-positive mothers and subsequently initiating them on ART [ 31 ]. In some States like Nagaland and Bihar, only half of the mothers are having at least one ANC visit in the first trimester. In Uttar Pradesh, accounting for almost one-fourth of the total pregnant women, only around two-thirds had at least one ANC visit in the first trimester [ 30 , 32 ]. Delayed registration in ANC care shortens the windows for offering complete packages of services including HIV testing and ART initiation.

Diagnosis of HIV during pregnancy/breastfeeding, the earlier the better, is fundamental to the initiation of the battery of services under EMTCT. HIV testing among pregnant women has seen rapid scale-up under the NACP with testing in 2021–22 almost three times of 2012–13. Incorporation of ‘opt out’ HIV testing services into routine ANC services and subsequent scale-up through decentralized models like facility-integrated model and community-based screening etc has driven this uptake. Still, even after not accounting for duplications, a total of 14 States/Union Territories in India, including Bihar, Delhi and Nagaland had less than 80 HIV tests for every 100 estimated pregnant women [ 30 , 33 ]. EMTCT aims to test at least 95% of the estimated pregnant women for HIV as one of the three process indicators. Increasing the reach and uptake of HIV testing services in these 14 States would be critical to drive the elimination agenda under NACP.

Around 62–72% of total vertical transmissions in Tamil Nadu and Punjab is estimated among mothers who dropped off ART during pregnancy or breastfeeding followed by 30–41% in Gujarat, Madhya Pradesh, Rajasthan, Telangana and West Bengal. These are States with coverage of 75% or more against estimated EMTCT needs [ 30 ]. Improving the retention and adherence support will be critical elements for making progress in these States. A basket of community and facility-based interventions, tailored to the local context, has helped to improve retention and adherence during pregnancy and breastfeeding. Mentor mother approach, facility and community-based adherence support groups, community-level health providers empowered through information technology-enabled tools, and engagement of WLHIV’s social network including male partners have all worked in different settings [ 34 – 38 ].

Nationally, around one out of every five vertical transmissions (18%) is among mothers who were infected with HIV during pregnancy or breastfeeding and ranged from 11% in Maharashtra to around 35% in Rajasthan. Responding to the vertical transmission of HIV among mothers infected during pregnancy or breastfeeding would require strategies to identify such cases creating opportunities for diagnosing and initiating them on ART. In general, NACP recommends one test for pregnant women as a norm. Though WHO has recommended repeat HIV testing in high-incidence settings, studies in diverse settings, including in India, have demonstrated repeat HIV testing in the third trimester, during labour and/or during breastfeeding among women who tested HIV negative in the first test as a cost-effective strategy [ 39 – 41 ].

Our analysis provides an opportunity to understand the estimated number of vertical transmissions from the 2021 round of HIV burden estimations in India as a whole and by the major States, however, there are limitations which need to be taken into account to put the results in the context. Part of the limitations is attributed to the Spectrum model itself while part comes from limitations in the availability of local input data.

While Spectrum-based modelled estimates on the level and trends of the HIV/AIDS epidemic continue to be the workhorse of AIDS response globally, nationally and locally; limitations of model-based estimates are well documented [ 42 – 46 ]. The UNAIDS Reference Group on Estimates, Modelling and Projections regularly review the emerging science and provides technical guidance on the incorporation of the latest evidence into the model transmission parameters informing the periodic update on the HIV component of the Spectrum model [ 47 , 48 ]. Still many assumptions on the age-sex patterns, fertility rates and mother-to-child-transmission probabilities, each with significant implications for the EMTCT estimates, are from settings which may have limitations in terms of representing country context [ 49 ]. International Epidemiology Databases to Evaluate AIDS (IeDEA) global consortium and Analysing Longitudinal Population-based HIV/AIDS data on Africa (ALPHA) network are two key sources periodically informing some of the fundamental assumptions under the Spectrum updates but with limited to no study sites in India [ 50 – 53 ].

Validation of modelled vertical transmission rate is another issue. In scenarios where it has been tested against real-world transmissions, it usually falls within the acceptable margin of error or closely meets observed rates [ 16 , 54 – 56 ]. However, the validation has been done in only select settings as as there are very few studies, and those only in high-prevalence settings, describing the vertical tranmission rate at population level.

Limitations on EMTCT estimates also arise from sub-optimum alignment between strategic information being generated under the routine service delivery vis-à-vis model need. For example, the default value for retention to ART programmes of HIV-positive mothers at the time of delivery ranges from 80–85% [ 57 ]. This default value is used for each of the State/UT-model in India in the absence of evidence on this particular parameter under the programme. It is possible that at least in some of the high-performing States in the southern and western regions of the country, the retention of ART is higher than 85%. The assumption that the breastfeeding pattern among HIV-positive women is the same as that of HIV-negative women is another strategic information gap with potential implications on EMTCT estimates. Investments augmenting the available strategic information, through a complementing system of programme monitoring, surveillnace and research, for the generation of local evidence informing various parameters of HIV burden estimations would be vital to improving progress tracking on EMTCT under NACP Phase-V of India.

Despite the limitations, to the best of our knowledge, the analysis presented in this paper is the first of its kind to describe the MTCT rate by State/UTs. Understanding the vertical transmission by States, along with their attributable causes, is one of the most basic steps towards the attainment of EMTCT under NACP Phase-V. The two-pronged complementing strategy of improving the service delivery along with augmenting the strategic information would be a critical determinant. The study also provides opprtunity for further research to understand the inter-state variations. While the study describes the differences in MTCT and underlying causes between States, more can be done to give insight into the reasons for these differences augmenting the intervention focus.

Acknowledgments

The project was part of the Surveillance and Epidemiological activities of the National AIDS and STD Control Programme of the Government of India. The authors thank the Project Directors and Strategic Information Team of all State AIDS Control Societies for their support in undertaking HIV Surveillance and Estimation activities in their states.

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• Open access
• Published: 12 March 2018

Building the evidence base on the HIV programme in India: an integrated approach to document programmatic learnings

• Deepika Ganju 1 ,
• Bidhubhusan Mahapatra 1 ,
• Rajatashuvra Adhikary 2 ,
• Sangram Kishor Patel 1 ,
• Niranjan Saggurti 1 &
• Gina Dallabetta 3  

Health Research Policy and Systems volume  16 , Article number:  22 ( 2018 ) Cite this article

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The Knowledge Network project was launched in 2010 to build evidence on the HIV epidemic by using the data generated by HIV programme implementing organisations in India. This paper describes the implementation of the programme and the strategies adopted to enhance the capacity of individuals to document and publish HIV prevention programme learnings. Further, it discusses the outcomes of the initiative.

A multipronged approach was adopted, where a group of experts were brought together to collaborate with programme implementing organisations, review available data, develop research questions and guide peer-reviewed publications. Further, scientific writing courses were conducted to support individuals from HIV programme implementing organisations as well as educational and government organisations (mentees) to build the documentation capacity of individuals leading programme implementation and current and future researchers. The impact and quality of evidence generated was measured by examining the number of papers published, the number of citations, and the number of papers with at least 10 citations. Additionally, course participants’ responses to open-ended questions in the anonymous course evaluation questionnaires are presented as verbatim quotes.

Overall, 99 papers on HIV programmatic learnings from India were finalised under the programme, of which 95 have been published. In all, 67 papers were co-authored by mentees. Most papers were published in high-impact factor (1 or more) journals and 72% were cited at least once in the literature. The main themes documented include key populations’ HIV risk, HIV risk of general population groups, HIV/STI service delivery models and community mobilisation interventions.

The study demonstrates that an integrated approach, involving partnership, capacity-building and mentorship, can maximise the use of available data and build the evidence base on HIV programmatic learnings. The capacity-building model adopted in the programme can be used to build scientific writing and documentation capacity in other public health programmes that are implemented at scale.

Peer Review reports

Scientific evidence is necessary to identify and prioritise health needs and to inform policy, programmes and services for better health outcomes [ 1 ]. In India, there has been a focus on generating evidence to guide the national HIV programme since 1992, when the Indian government launched the first phase of the National AIDS Control Programme (NACP I) under the National AIDS Control Organisation (NACO) [ 2 ]. Following the scale-up of prevention efforts during NACP III (2007–2012), a vast amount of surveillance, programme and evaluation data was collected by multiple stakeholders, including government, national and international agencies, universities and programme implementing organisations, spanning wide geographies, a large population base and diverse intervention environments on a range of critical issues.

While NACO’s priority during NACP III (2007–2012) was to maximise the use of available data for evidence-based planning [ 3 ], studies suggest that the wealth of data on the HIV epidemic in India available at the time was not being rapidly translated into evidence in the form of peer-reviewed publications [ 4 , 5 , 6 , 7 , 8 ]. An assessment of HIV/AIDS-related publications worldwide indicated that in 2002–2003, just 1.4% of the publications were from India, although India had approximately 10% of the world’s estimated HIV-positive population in 2002 [ 5 ]. In health research more generally, India’s relative contribution was also low; over a 10-year period (1992–2001) India contributed just 12 out of 1000 published articles worldwide [ 7 ].

Assessments at the time have also highlighted the limited evidence base on key issues for HIV programming in India [ 5 , 6 , 8 ]. Published research focused mainly on basic and clinical sciences, while publications in critical areas, such as the validation of HIV estimation approaches, epidemiology of HIV in high-risk groups, impact evaluations of HIV prevention programmes for high-risk groups and the cost-effectiveness of programmes, were poorly represented. Moreover, evaluation studies were based on relatively small sample sizes [ 5 , 6 , 8 ].

In the context of the availability of a vast amount of data on the HIV epidemic in India, the paucity of evidence-based publications and limited documentation capacity in the country [ 6 , 9 ], and to align with the national priority of building evidence to inform HIV programme implementation, in 2010, the Population Council launched the Knowledge Network project. This is an innovative programme to maximise the use of data and build sound evidence on the HIV prevention programme in India, which could guide future interventions in India and other settings with similar epidemics. The programme specifically aimed to strengthen national capacity to document HIV prevention programmatic learnings from India and to disseminate evidence to wide audiences through the publication of evidence-based papers in peer-reviewed journals. This paper describes the implementation of the documentation programme and the strategies adopted to enhance the capacity of individuals to document and publish HIV prevention programme learnings, and discusses the outcomes of the initiative.

In the context of the growing HIV epidemic in India, several organisations have been implementing large-scale HIV prevention interventions since 2003 across the six high-HIV prevalence states of India – Maharashtra, Tamil Nadu, Andhra Pradesh, Karnataka, Manipur and Nagaland. In the process, a vast amount of theme-specific and programme-related data was collected through a robust monitoring system [ 10 ]. However, this data was limited to programme use, primarily to guide programme decisions and activities related to resource allocation, implementation scale-up, course corrections and shifts in implementation, programme redesign, impact evaluation and advocacy, and were not being published as evidence [ 11 ]. Against this background, the Knowledge Network project adopted an integrated approach to document the different HIV programme strategies being implemented, synthesise learnings from multiple datasets on the HIV programme, and support the documentation of HIV prevention programme lessons from across the country.

The Knowledge Network project

The Knowledge Network project was implemented from 2010 to 2016. Given that a vast amount of survey data was available, the project sought to ensure that the data were maximally utilised for scientific output beyond the primary purpose of programme monitoring. It provided the producers of data (programme managers) an opportunity to use the programme data and document their experiences. Simultaneously, by providing datasets to young investigators and making data available for triangulation, it sought to reduce the ‘hold on data’, and increase data sharing and hence the use of data for scientific research.

The project adopted a multipronged approach to build the evidence on the HIV epidemic in the country. For one, it brought together a core group of experts from six research and academic institutes to review the available data and develop research questions in the context of national and global research priorities, and publish papers on identified themes. At the same time, it trained individuals from HIV programme implementing organisations and young researchers in scientific writing and mentored them to document and publish HIV programme lessons from India in peer-reviewed journals within a predetermined timeframe (the capacity-building and mentorship process is discussed in the next section). Project funding also supported Council research teams to analyse the data and publish papers on identified gaps and priority documentation areas. Additionally, in partnership with NACO, the project built the documentation capacity of over 40 National Data Analysis Plan (NDAP) analysts through scientific writing workshops, and supported analysts to finalise and publish programme data as peer-reviewed papers. Finally, 13 workshops were conducted on the principles of scientific writing, data analysis, interpretation and presentation, and documentation in collaboration with educational and government organisations (Tata Institute of Social Sciences, NACO and the Family Welfare Training and Research Centre, Government of India, among others) to build the documentation capacity of over 400 current and future researchers working in the field of HIV and public health, including Masters’ and Doctoral students, faculty from national universities and medical institutes, and Maharashtra State AIDS Control Society (MSACS) programme staff (project activities and outputs are presented in Table 1 ).

Capacity-building and mentorship for documentation and publication of evidence-based papers

Three cohorts of individuals (hereafter referred to as mentees) were trained over the period 2010–2013. Mentees were primarily programme managers who had not published an evidence-based paper and young academics in the early phase of their careers with no prior experience or formal training in scientific writing. While mentees in the first course were from non-governmental organisations and academic institutions, participants in the second and third courses included programme staff from the government (NACO and State AIDS Control Societies).

The capacity-building and mentorship programme was designed to address the multiple challenges related to the publication of evidence-based papers, such as lack of dedicated time for paper writing, inadequate knowledge of scientific writing conventions, limited skills to analyse and interpret data, limited access to scientific literature, lack of mentorship support and dropout, and psycho-social issues including lack of confidence in writing skills, meeting the publishing standard of peer-reviewed journals, and fear of rejection [ 1 , 12 , 13 , 14 , 15 , 16 , 17 , 18 ]. Workshops were organised to build scientific writing skills and support mentees to conceptualise a topic for documentation based on the programme being implemented, the innovativeness of the programme strategy and the availability of programme data, and follow-up workshops and small group meetings were organised to provide dedicated time for paper writing. Mentorship was an intrinsic component of the capacity-building process, and a group of mentors with diverse skills provided ongoing support and critical feedback to mentees on all aspects of paper writing to take the paper through to publication. The programme followed a structured sequence, with well-defined timelines for preparing and revising papers, and submitting a final paper for publication to a peer-reviewed journal (Fig. 1 ).

Process of capacity-building and mentorship for documentation and publication of evidence-based papers

Identification of documentation topics

During each scientific writing course, a group of mentors and individual mentees discussed mentees’ areas of interest and the programme area where they were working. Based on the available HIV programme data and identified priority documentation topics to address knowledge gaps, mentees selected a topic of interest for paper writing. The mentors’ group evaluated the uniqueness and innovativeness of the selected topic, following which the analysis team confirmed the availability of reliable data to support the documentation of the topic selected. Through this process, project-supported papers were identified.

Once the documentation topic was selected, mentees identified the type of support needed for analysing and publishing data. No financial incentives were provided for participation in the course or publication.

Training in scientific writing

Mentees in each cohort attended a scientific writing workshop for training in skills that are often inadequately developed for writing a peer-reviewed paper, such as scientific writing, topic conceptualisation, data analysis, and interpretation and presentation of results. The first two and a half days of the workshop were assigned to training mentees, through classroom sessions and practical exercises, on the principles of writing a scientific paper and the publishing process based on a module developed by international health experts and customised for research in HIV. Sessions covered the purpose and content of each section of a journal article, and provided a logical formula for scientifically writing each section. The workshop also guided mentees on searching for relevant literature, reviewing the literature, problem conceptualisation, research design and methodology, data analysis, and interpretation and presentation of data.

Additionally, the workshop provided mentees dedicated time to work on conceptualising their paper using a preselected dataset to address their research question, and during the remaining two and a half days, mentees were supported to conceptualise and prepare an extended abstract on their assigned topic. Each mentee was assigned a mentor, based on the kind of support needed and topic being documented, who provided feedback during the workshop as well as follow-up support to guide the paper to completion. Based on individual feedback, as well as collective feedback from the mentors’ group, on the feasibility of documenting the proposed research topic, formulating their research question and conceptualising their research topic, mentees prepared an extended abstract of their paper. Data analysis support was provided as needed. Extended abstracts, with a clear conceptualisation of measures, analysis plan and preliminary results were presented at the end of the workshop for feedback from the mentors’ group. Time-lines for preparing draft and final papers were set at the workshop to ensure mentees’ momentum and interest in paper writing.

Follow-up with mentees for preparation of draft papers

Over the next 10 weeks, extended abstracts were reviewed by assigned mentors, and mentees were given detailed feedback on email/Skype. Based on these comments, mentees modified their paper and submitted a first draft for review to their assigned mentor and the Council/project team. At the same time, mentees were provided additional resources, including access to published literature, data, programme content, and data analysis and scientific writing support, to enable them to complete a draft paper.

Follow-up workshop to revise draft papers

As most mentees were involved with routine work once they returned to office, with limited time for paper writing, a follow-up five-day offsite workshop was organised to provide mentees dedicated time to review and revise their paper and prepare a near-final draft for submission to a peer-reviewed journal. With guidance from assigned mentors, and data analysis and scientific writing support, mentees revised their papers, which were shared with the mentor group for further review. Following a review of the comments by the assigned mentor, mentees prepared a near-final draft paper. Additionally, mentees were trained on the use of Endnote (a web-based reference manager), guided on the journal submission and review process, and provided a comprehensive journal information guide (including areas of interest, contact information, instructions for authors and impact factor) to help them select an appropriate journal for publication. At the end of the workshop, mentees presented an overview of their revised paper to the mentor group for another round of feedback and review.

Preparation of final papers

Mentees worked closely with their assigned mentors and the Council team after the second workshop (weeks 13–24) to further revise their papers and prepare a final draft. Where necessary, the Council/project team organised small group meetings to facilitate mentor-mentee discussions, and provide data analysis and writing support for paper finalisation.

Final review and submission of papers to a journal for publication

Following multiple rounds of feedback and revision, mentees submitted a final draft paper to the Council peer-review team (weeks 25–32). Based on their feedback, mentees finalised their paper. The final papers were technically edited, formatted according the selected journal style and submitted to the journal for publication. If necessary, mentees were supported through the submission process.

The following measures were used to assess the overall performance and impact of project publications. We used Google Scholar to retrieve paper-specific citation metrics for programme published papers, including the total number of citations, citations per paper and the i10 index (number of papers with at least 10 citations). Additionally, the impact factor of the journal in which each paper was published (2015/2016 Thompson Reuters ranking or the impact factor indicated on the journal home page) was used as a proxy indicator for quality. We also assessed the number of downloads/views for each paper based on information drawn from the journal site. Data for this paper cover the period January 2010 to December 2016.

Data analysis

Data for the 99 project-supported papers were entered in MS Excel and analysed. Results are presented as absolute numbers or percentages relative to the base indicator.

The scientific writing and follow-up workshops were evaluated based on mentees’ feedback. Following each workshop, mentees were asked to fill in an anonymous evaluation questionnaire, including rating their improvement in knowledge following participation in the workshop, and the likelihood of using the information and skills gained in their future work. Responses ranged from 0 (not at all) to 2 (very much). Open-ended questions were included on what mentees liked best/least about the course, which components could be changed and recommendations to improve effectiveness. Responses to open-ended questions in the course evaluation questionnaires are presented as verbatim quotes. Participants have been given fictitious names to ensure confidentiality.

Published papers were thematically reviewed and classified into nine broad themes, and across multiple categories, to identify themes where papers exhibited the greatest impact. Themes included the key populations’ (female sex workers, high-risk men who have sex with men, transgender persons and injecting drug users) HIV/sexually transmitted infection (STI) risk, HIV/STI risk of general population groups, bridge populations’ (truckers, clients of female sex workers and male migrants) HIV/STI risk, HIV prevention programmes, HIV/STI service delivery models (e.g. integration of HIV and maternal health services, and public–private provider care models), community mobilisation interventions, impact of scaled-up HIV prevention programmes, monitoring and evaluation methodologies, and behaviour change models.

Ethics statement

Ethical approval for the study was submitted to the Population Council’s Institutional Review Board, which exempted the project from review as it did not involve any primary data collection.

Peer-reviewed evidence-based papers published under the programme

A total of 32% (99/312) of the papers on the HIV epidemic in India published in peer-reviewed journals (2006–2016) are outputs of the programme (Table 2 ). Of these, 95 programme-supported papers have been published in national and international peer-reviewed journals (Additional file 1 ). On average, 14 programme-supported papers were published each year. Almost three-quarters of these published papers (72%; 68/95) have been cited at least once in the literature.

Publication output from the capacity-building and mentorship programme

The capacity-building and mentorship programme, which provided mentees ongoing guidance and support for documentation and publication of evidence-based papers, resulted in a significant number of publications. Overall, 70 mentees were trained and supported over the programme, and 10 NDAP analysts were mentored by the programme to finalise papers. Over two-thirds (68%; 67/99) of the papers finalised under the Knowledge Network project have been co-authored by mentees.

The capacity-building and mentorship process also resulted in several individual-level benefits. Mentees reported enhanced documentation skills, including making them more adept in writing different sections of an evidence-based paper, understanding the process of conceptualising a research question and interpreting and analysing programme data to understand results on the ground. It also created an appreciation of the importance of a well-constructed abstract, selection of appropriate journals for paper submission and an understanding of the process of submission and correspondence with journal editors and reviewers.

“Interaction with resource persons and practice exercises greatly helped to clarify doubts .” Sheila, workshop participant “The paper concept is clear to us now. This course helped us to learn many things, including how we should look at data, how it should be interpreted and how to measure programme effectiveness.” Ram, workshop participant

As a result of ongoing support, motivation and encouragement, mentees developed confidence in their ability to document HIV programme lessons and publish evidence-based papers. The process also created an appreciation of the need for data to assess programme impact.

“Mentors gave valuable inputs and created a supportive environment, which improved our confidence.” Rita, workshop participant “This has been one of the most interesting workshops; for those who do not come from a research background, being part of the workshop provided confidence in the programme implementation strategy [and helped us realise that] writing a scientific paper is possible… we need to see the result of the programme on the ground [and this helped us] see the impact of programmes.... Support was good. ” Vinod, workshop participant

Contribution to the literature on the HIV epidemic in India

The programme contributed to building the evidence on multiple themes on the HIV epidemic in India. The 99 programme-supported papers are primarily original research articles, 2 are systematic reviews and 3 are case studies. Overall, of the published papers (95), 60% covered issues related to key populations’ HIV risk, 23% documented the HIV risk of general population groups, 19% documented HIV/STI service delivery models and 18% documented community mobilisation interventions (Fig. 2 ). Most papers co-authored by mentees documented key populations’ HIV risk (54%), followed by the risk of general population groups (30%), HIV prevention programmes (25%) and community mobilisation interventions (22%).

Number of papers published under the project by theme: Overall and by mentees, 2010–2016

Journal impact factor and citation rates

Programme-supported papers have been published in 38 different journals, of which 19 have been published in journals with an impact factor of 1–1.99, 14 in journals with an impact factor of 2–2.99, and 25 in journals with an impact factor of 3.0 or more (not shown in tabular form).

Results from the Google Scholar citation index indicate that the 95 programme-supported published papers have been cited 952 times; 72% (68/95) have been cited at least once and 33% have been cited at least 10 times (i10 index). Further, of the 95 published papers, 79% (75/95) are included in the Scopus/PubMed/Web of Science/IndMED databases. Citations over the period increased from 31 in 2011 to 214 in 2016 (not shown in tabular form).

In terms of thematic impact (Table 3 ), on average, each paper has been cited 10.4 times, with above-average citations of papers documenting key populations’ risk, bridge populations’ risk, HIV care service delivery models, and monitoring and evaluation methodologies. The largest number of average downloads/views of papers covered the themes of HIV/STI service delivery, community mobilisation interventions, impact assessments of programme effectiveness and HIV prevention programmes. Papers published by mentees (63) were cited on average 5.4 times, with above-average citations of papers relating to HIV risk of key populations, HIV care service delivery models and community mobilisation interventions. Behaviour change models were less frequently documented and cited in the literature.

This study demonstrates that HIV programme data, covering a range of geographies, time periods, population groups and intervention strategies, can be synthesised and programmatic lessons published as evidence-based papers in peer-reviewed journals. The Knowledge Network project was initiated during NACP III (2007–2012), when the HIV prevention programme was being scaled up across the country and the need for an evidence-informed policy formulation process was recognised [ 4 ], yet research output from India was limited [ 9 ]. Through the adoption of an integrated approach, including the publication of papers on identified priority documentation topics in partnership with a core group of academics, and training and mentoring HIV prevention programme managers and young academics to publish peer-reviewed papers, the programme contributed significantly to the overall literature on the HIV epidemic in India and, to date, the project has supported the finalisation and publication 99 peer-reviewed papers on HIV programmatic learnings (Additional file 1 ). The capacity-building programme chartered new ground by training and mentoring participants, most of whom had no prior publishing experience, to document and publish programmatic lessons from the HIV epidemic in India, and as a result, over two-thirds of the overall programme publications are co-authored by programme-supported mentees.

The publication rate under the programme – 99 papers over the project period – far exceeded the output envisioned under the project (10 publications a year). The high publication rates from the capacity-building programme can be attributed to several factors. For one, the training course was sequenced, with well-coordinated activities and clearly identified goals, which kept mentees motivated and focused on timelines and deliverables [ 14 ]. Second, the programme brought together individuals with programme experience (mentees) and mentors with scientific rigor from academic and research institutions in a symbiotic partnership to build sound evidence from the data; while mentors provided mentees ongoing support throughout the topic conceptualisation, analysis and writing phases, programme managers who are ‘data producers and users’ provided insights from the data to inform appropriate programme strategies and priorities on the ground. As documented elsewhere, ongoing mentorship is critical to achieve high publication outcomes, and reduce drop-out and delay [ 1 , 13 , 18 , 19 ]. Moreover, mentor-mentee matching – where each mentee was paired with a mentor with expertise in their field – optimised interaction and guidance, and facilitated the timely completion of quality papers [ 15 ]. Third, regular monitoring by the project team ensured the quality and progress of work. In cases of delays, small group meetings were organised with mentors and resource persons to enable mentees to discuss problems and seek support to complete their paper. Fourth, resource persons provided mentees with data analysis and scientific writing support, and access to published literature and other resources, as needed. The careful selection of mentees based on their interest and commitment ensured most were able to complete a peer-reviewed paper.

Supporting mentees to analyse their own datasets and publish the lessons helped to build their skills in documentation, develop confidence in their ability to achieve high publication standards, and created an appreciation of the need for collecting quality data and the benefits of robust research, which can be translated into scientific evidence. However, despite intensive efforts, some mentees were unable to submit a final paper to a journal for publication due to job transition or burnout; in such cases, for the most part, other participants from the same institution were able to complete the assigned paper. Mentors were sometimes unable to commit dedicated time for ongoing mentorship. Regular follow-up and monitoring of deliverables helped to ensure that activities stayed on track and reduce burnout. As a result, most mentees achieved their goal of co-authoring an evidence-based paper on HIV programme lessons for publication in a peer-reviewed journal, while some mentees co-authored two or more papers over the project period.

The programme built a sound evidence base on the HIV epidemic in India through the publication of a number of peer-reviewed papers. Most papers were published in high impact journals, indicating that the evidence is being disseminated to a wide audience, the output is high quality and meets the rigorous standards of peer-reviewed publications. These papers drew on multiple datasets, including programme evaluation data, bio-behavioural surveys, mapping exercises and secondary data to document a range of programme-related themes, presenting a comprehensive picture of the HIV epidemic in India. These publications have been widely cited in the literature; multiple citations indicate that the papers are widely recognised by researchers in the field and are being linked with prior work in the scientific literature. As discussed, research topics were carefully selected to address knowledge gaps and to align with national programme priorities, which may have contributed to high citation rates. Moreover, several themes documented under the project and which were highly cited, including the impact of community mobilisation interventions, the HIV risk of general population groups (antenatal clinic attendees, blood donors, slum populations, married women, and adult men and women) and bridge populations (long-distance truckers and clients of female sex workers), and HIV service delivery interventions (peer-led outreach, sex worker-led crisis response systems, integration of HIV and maternal health services, and the provision of anti-retroviral treatment services), reflect a shift in the focus of HIV prevention research in India. Issues such as the HIV vulnerability of mobile populations in India, primarily male migrant workers, have been extensively documented for perhaps the first time under the programme. Notably, mentees, who were mainly programme managers with a sound understanding of issues on the ground, and able to identify appropriate needs and suggest relevant ground-level programmatic solutions, made a substantial contribution to the literature on several themes such as key populations’ risk, bridge populations’ risk, community mobilisation interventions and lessons from HIV prevention programmes. Our study suggests that efforts are needed to build the evidence on less frequently documented and cited themes such as behaviour change models for HIV prevention.

The programme also highlights the value of peer-reviewed publications in shaping policy. NACO has incorporated lessons from the published literature on migrants’ HIV risk into the national programme, and India has adopted a national HIV prevention strategy that focuses on corridors of migration, which include hometowns, destinations and the transit points between them, rather than destination areas alone.

High publication output, multiple citations and publications in high-impact factor journals together suggest that the programme has been successful in building a robust evidence base on the HIV epidemic, contributing significantly to the overall published literature on the HIV epidemic in India and informing the national prevention programme in a relatively short time span of 6 years. These results suggest that the capacity-building and mentorship model described in this paper can be applied in different settings to build scientific writing and documentation capacity in other public health programmes that are implemented at scale.

The successful implementation of the programme had several spinoffs. While the programme initially focused on supporting programme implementers from non-governmental organisations to document and publish lessons from their programme data, efforts were scaled up to support participants from NACO and State AIDS Control Societies to analyse their HIV programme data and publish the evidence in peer-reviewed journals. Moreover, NACO adopted a similar capacity-building and mentorship model in 2014–2015 to support the analysis of national HIV/AIDS programme data under NDAP. The Knowledge Network project partnered with NACO to build the documentation capacity of over 40 NDAP analysts through scientific writing workshops and supported analysts to finalise and publish programme data as peer-reviewed papers. The programme also built an appreciation of the need to strengthen research capacity to support the documentation and publication of HIV programme data in India and to develop the documentation skills of future researchers. Following requests from government and academic institutes (MSACS, Family Welfare Resource and Training Center and Tata Institute of Social Sciences), scientific writing workshops were organised.

While this study provides insights into a novel initiative for the documentation and publication of HIV programmatic learnings from India, the findings need to be interpreted in light of certain limitations. First, citation analysis can only be applied to published literature in journals that are indexed; however, some programme papers may have been published in non-indexed journals and may therefore not have been included in the analysis. Further, citations are treated as equal irrespective of whether the work is being cited for its positive contribution or critiqued for its poor quality. In addition, the citation figures for more recent years are lower because papers published during this period have had less time to accumulate citations. Moreover, given the brief assessment period, some papers may not have established their presence in the publication domain, and therefore our analysis may not have captured the full variability of citation patterns of a mature set of publications. We have reported the journal impact factor for 2015 or 2016; however, a journal’s impact factor changes from year to year. Moreover, caution must be used in emphasising the scientific quality of publication output based solely on citation and impact factor metrics due to the potential to generate misleading and biased results [ 20 ]. Additionally, the effect of the capacity-building programme was self-reported, and the possibility of respondent bias needs to be considered.

This study demonstrates that the adoption of an integrated approach can support the documentation and publication of programmatic lessons as evidence-based papers in peer-reviewed journals. As seen in this study, the programme contributed significantly to the overall published literature on the HIV epidemic in India and informed HIV prevention programmes and policy in the country. As documented, a well-structured and integrated documentation programme can result in a high publication output, multiple citations and publications in high-impact factor journals. The capacity-building model described in this paper, which set well-defined targets for deliverables, ensured ongoing mentorship and provided regular monitoring, can be applied to build scientific writing and documentation capacity in other public health programmes that are implemented at scale.

Abbreviations

Maharashtra State AIDS Control Society

National AIDS Control Organisation

National AIDS Control Programme

National Data Analysis Plan

Sexually transmitted infection

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Acknowledgements

We would like to acknowledge the contributions of all members of the Knowledge Network team and the Knowledge Network Consortium institutions to the programme.

This paper was written as part of the Knowledge Network project of the Population Council, which is a grantee of the Bill & Melinda Gates Foundation through Avahan, its India AIDS Initiative. The views expressed herein are those of the authors and do not necessarily reflect the official policy or position of the Bill & Melinda Gates Foundation and Avahan. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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Deepika Ganju, Bidhubhusan Mahapatra, Sangram Kishor Patel & Niranjan Saggurti

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Ganju, D., Mahapatra, B., Adhikary, R. et al. Building the evidence base on the HIV programme in India: an integrated approach to document programmatic learnings. Health Res Policy Sys 16 , 22 (2018). https://doi.org/10.1186/s12961-018-0291-3

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Awareness of HIV/AIDS among rural youth in India: a community based cross-sectional study

Affiliation.

• 1 M. P. Shah Medical College, Jamnagar (Gujarat), India. [email protected]
• PMID: 21997939
• DOI: 10.3855/jidc.1488

Introduction: More than one third of reported cases of HIV/AIDS in India are among youth and 60 percent of these reside in rural areas. Assessment of the awareness of HIV/AIDS in the youth is important for determining the impact of previous and current awareness programs as well as the need for interventions. This study aimed to assess the knowledge of rural youth regarding HIV/AIDS and to explore the epidemiological determinants of awareness among them.

Methodology: A community-based cross-sectional study was conducted among youths aged 15-24 years in rural areas of the Saurashtra region of Gujarat, India. A cluster sampling design was used, surveying 50 subjects from each of 30 clusters. Data was collected through house-to-house visits using a semi-structured questionnaire. Proportions and logistic regression were used for analysis.

Results: Out of a total of 1,237 subjects who participated in survey, 60% knew something about HIV. Of those who had heard of HIV, more than 90% subjects knew the modes of transmission and more than 80% were aware of modes of prevention of HIV/AIDS. One fifth of the subjects had misconceptions in relation to HIV/AIDS. On applying multiple logistic regression, age, education, occupation, and mass media exposure were found to be the major determinants of their knowledge with regard to HIV/AIDS.

Conclusions: Basic knowledge of HIV/AIDS is still lacking in two fifths of the rural youth. Literacy and media exposure are factors that determine awareness of HIV among them and can be helpful to raise their knowledge regarding this scourge.

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ORIGINAL RESEARCH article

Long-term trends of hiv/aids incidence in india: an application of joinpoint and age–period–cohort analyses: a gendered perspective.

• 1 Department of Survey Research and Data Analytics, International Institute for Population Sciences, Mumbai, Maharashtra, India
• 2 Department of Statistics, University of Calcutta, Kolkata, West Bengal, India
• 3 Scientist II (Epidemiology), Clinical Research Unit, All India Institute of Medical Sciences, New Delhi, India
• 4 Department of Fertility and Social Demography, International Institute for Population Sciences, Mumbai, India
• 5 Department of Community Medicine Dr. Baba Saheb Ambedkar Medical College and Hospital, New Delhi, India
• 6 Department of Family & Generations, International Institute for Population Sciences, Mumbai, India

Background: Monitoring the transmission patterns of human immunodeficiency virus (HIV) in a population is fundamental for identifying the key population and designing prevention interventions. In the present study, we aimed to estimate the gender disparities in HIV incidence and the age, period, and cohort effects on the incidence of HIV in India for identifying the predictors that might have led to changes in the last three decades.

Data and methods: This study utilizes data from the Global Burden of Disease Study for the period 1990–2019. The joinpoint regression analysis was employed to identify the magnitude of the changes in age-standardized incidence rates (ASIRs) of HIV. The average annual percentage changes in the incidence were computed, and the age–period–cohort analysis was performed.

Results: A decreasing trend in the overall estimates of age-standardized HIV incidence rates were observed in the period 1990–2019. The joinpoint regression analysis showed that the age-standardized incidence significantly declined from its peak in 1997 to 2019 (38.0 and 27.6 among males and females per 100,000 in 1997 to 5.4 and 4.6, respectively, in 2019). The APC was estimated to be 2.12 among males and 1.24 among females for the period 1990–2019. In recent years, although the gender gap in HIV incidence has reduced, females were observed to bear a proportionately higher burden of HIV incidence. Age effect showed a decline in HIV incidence by 91.1 and 70.1% among males and females aged between 15–19 years and 75–79 years. During the entire period from 1990–1994 to 2015–2019, the RR of HIV incidence decreased by 36.2 and 33.7% among males and females, respectively.

Conclusion: India is experiencing a decline in new HIV infections in recent years. However, the decline is steeper for males than for females. Findings highlight the necessity of providing older women and young women at risk with effective HIV prevention. This study emphasizes the need for large-scale HIV primary prevention efforts for teenage girls and young women.

Introduction

Monitoring the spread of HIV in a population is fundamental to controlling HIV in the population in an effort for its prevention and resource allocation. Despite the passing of more than four decades since the onset of the HIV epidemic, HIV continues to pose a challenge to global public health ( 1 ). HIV remains a leading cause of mortality in STDs and threatens millions of lives worldwide. Incidence being the key indicator of the rate of HIV transmission in different populations provides the most crucial means of assessing the impact of policies and programs aimed at HIV prevention. Globally, the number of new infections has reduced by 52% since 1997, and in 2020, around 1.5 million people became newly infected with HIV ( 2 ). At the national level, ~69,220 new HIV infections occurred in 2019 which has declined by 86% from the peak observed in 1997 ( 3 ). The fall in the incidence of new HIV infections has been attributed to changing behaviors ( 4 ) and increased awareness of HIV ( 5 ). Worldwide, programs to prevent HIV infection have included behavioral targets, such as the adoption of HIV testing, the use of condoms, and a reduction in the number of sex partners. Following the third target of Sustainable Development Goals (SDGs) which aims to end the epidemics of AIDS by 2030 ( 6 ), UNAIDS has set a target for each country to reduce the HIV incident cases by 75% between 2010 and 2020 and deaths by 90% between 2010 and 2030 ( 7 ). Moreover, gender differences have been observed in the number of new HIV infections, especially at younger ages with the HIV pandemic being “feminized” ( 8 ). Low access to information, higher biological susceptibility to HIV, exposure to blood transfusion due to anemia, and pregnancy-related complications coupled with low access to information and treatment make women more vulnerable to HIV ( 9 ).

HIV has spread throughout the country after India recorded its first HIV case in the year 1986 ( 10 ). In 2019, an estimated 2,349,000 people were living with HIV/AIDS in the country, with an adult prevalence of 0.22%. Furthermore, out of the total number of people living with HIV/AIDS (PLWHA), 3.4% of them were children, whereas ~44% of the total PLWHA aged 15 years and above were female population ( 3 ). A glance at India's progress toward the 90-90-90 target of the Joint United Nations Programme on HIV/AIDS ( 9 , 11 ) suggests that only 79% of HIV-positive people are aware of their HIV status and only 71% of those aware of their HIV status are on HIV treatment ( 12 ). Furthermore, the effectiveness of strategies aimed at reducing the number of new infections cannot be determined because of a lack of data on key indicators such as viral suppression rates. Although estimates suggest a decline in the incidence of HIV/AIDS, there exists some interstate variation. For instance, HIV infection rates have risen in recent years in Maharashtra, Bihar, and Uttar Pradesh ( 3 ).

To track and monitor the progress made by the country to achieve the specified targets, it is crucial to understand the trend of HIV infection in the previous years. Additionally, indicators, such as incidence rate, are of extreme importance in indicating the effect of interventions and predicting future values for evaluation purposes. Moreover, a trend analysis has advantages in terms of identifying the predictors that may have led to changes within the time frame. Although previous studies have mainly examined the age distribution of HIV incidence or mortality, they have not considered the effects of period and cohort. As a result, it is still unclear what the trends of HIV mortality are in different age groups and what the relative risk (RR) is due to period and cohort effects. Thus, it is imperative to conduct a comprehensive analysis to address these limitations and provide answers to these important questions. This study aims to understand the trend in HIV/AIDS incidence which would help the planners in taking evidence-based actions and would provide a baseline for planning purposes. Additionally, this study addresses gender gaps in the changing incidence rates to have more focused preventive initiatives.

Materials and methods

Data source.

The GBD study is an important source for comprehending the growing health issues that individuals experience globally in the twenty-first century. The GBD research, led by the Institute for Health Metrics and Evaluation (IHME), is the largest global observational epidemiological study to date. By monitoring progress within and between nations, GBD offers an essential tool to educate medical professionals, researchers, and policymakers, improve lives globally, and raise accountability. The IHME has developed a method for calculating the burden of diseases, injuries, and risk factors to inform health policies and programs throughout the past 20 years. Consistently, GBD provides comparable estimates of the primary disease burden indicators, such as the HIV incidence rate ( 13 ).

To determine the mortality rates and cause fractions specific to each cause, the standard Cause of Death Ensemble Model (CODEm) and spatiotemporal Gaussian process regression were used. In recent years, various relevant studies have been reported on the comprehensive description of CODEm ( 14 – 17 ). This method consists of adjustment of cause-specific deaths to match the total all-cause deaths calculated as part of the GBD population, fertility, and mortality estimates and subsequent multiplication of deaths by standard life expectancy at each age to calculate YLLs. Then, for the majority of cases, the Bayesian meta-regression modeling tool DisMod-MR 2.1 was used to guarantee consistency between the incidence, prevalence, remission, excess mortality, and cause-specific mortality. Multiplication of the prevalence estimates was performed by disability weights for the mutually exclusive squeal of diseases and injuries, and thus, YLDs were calculated. The subsequent uncertainty intervals (UIs) were reported for every metric using the 25th and 975th ordered 1,000 draw values of the posterior distribution ( 13 ).

The case definition includes HIV having ICD 10 codes B20-B24, C46-C469, and D84.9. Data for the incidence number and rate of HIV in India were extracted from an online tool produced by the IHME, which is publicly available called the Global Health Data Exchange (GHDx) query tool ( http://ghdx.healthdata.org/gbd-results-tool ). The key sources of data that GBD used include India Demographic and Health Surveys, Medical certification of cause of death of the country and various states, vital statistics, and published scientific articles ( 13 ). The present study utilized the Global Burden of Disease Collaborative Network ( 18 ) database to systematically summarize and analyze the incidence of HIV and its changes from 1990 to 2019 in India. The annualized rate of change for the rates over the period 1990 to 2019 has been calculated. Age and gender-wise incidence rates have been reported for India.

Statistical analysis

Joinpoint regression analysis.

The joinpoint regression analysis was employed to identify the changes in ASIRs of HIV among the overall and sex-specific population for all ages by using the joinpoint regression program version 4.5.0.1 (Statistical Research and Applications Branch, National Cancer Institute) ( 19 ). This technique (joinpoint regression) differs from traditional piecewise or segmented regression model in terms of identification of joinpoint(s), and their location(s) are estimated inside the model rather than being specified randomly as in the case of piecewise or segmented regression analysis. For every statistically significant segment of the time trend, the model gives the average percentage change (APC) which reflects the rate of change between the two joinpoints. This model also gives the value of average annual percentage change (AAPC) which depicts the overall rate of change in HIV incidence.

The Z test is used to determine whether an AAPC or APC is different from zero. The terms “increase” and “decrease” are used only when the slope (AAPC or APC) of the trend is statistically significant, while the term “stable” refers to a non-significant slope of the trend. For the whole range of our study periods, the average APC (AAPC) is calculated using the best model with a maximum of five joinpoints relating to six segments ( 20 ).

Age–period–cohort analysis

HIV/AIDS incidence rates not only reflect the incidence risk of HIV/AIDS experienced by the population in a given year but also the consolidation of health and wellbeing risks since birth. When estimating the incidence attributed to HIV/AIDS, a common statistical analysis could not decompose these cumulative risks and health hazards ( 8 , 21 ). The age–period–cohort (APC) analysis is a widely used statistical technique to describe the complex situation of the social, environmental, and historical factors that simultaneously affect individuals and groups of individuals ( 22 ). In the current study, APC analysis is used to estimate the net age, period, and cohort effects on the incidence of HIV/AIDS from observed age-specific incidence rates ( 8 , 23 – 25 ). It is well-known that APC suffers from an identification problem because of the linear relationship between age, period, and cohort, i.e., cohort = period – age. Therefore, the intrinsic estimator (IE) method was used to decompose the temporal trends and provide unbiased, valid, and relatively efficient estimation results ( 26 , 27 ). In the APC-IE model, the age-specific incidence rates were recoded into successively 5-year age groups (0–4, 5–9, 10–14, …, 90–94), consecutively 5-year period (1990–94, 1995–99, 2000–04, …, 2015–19), and correspondingly consecutive 5-year birth cohort groups (1900–1904, 1905–1909,..., 2015–2019) to estimate net age, period, and cohort effects on the incidence of HIV/AIDS.

Stata 16.0 software (Stata Corp, College Station, TX, USA) was used to run the APC model. Deviance, Akaike's information criterion (AIC), and the Bayesian information criterion were used to assess the degree of model fitting (BIC). Risk ratios and standard error (SE) coefficients were estimated.

The trend of age-standardized incidence of HIV/AIDS for the period of the last 30 years (1990–2019) is displayed in Figure 1 . During the first 7-year period (1990–1997), the age-standardized incidence of HIV/AIDS reported a rapid increase for both genders, and at the same time, the gap in HIV/AIDS incidence among males and females widened with a continuously lower incidence rate in females. After the year 1997, the age-standardized incidence of HIV/AIDS decreased very rapidly till 2009 and reached 5.4 males per 100,000 males and 4.6 females per 100,000 females in 2019. Additionally, in the same period (1997–2019), the gap between male and female HIV/AIDS incidence also decreased. Furthermore, the highest age-standardized incidence of HIV/AIDS was found in the year 1997 with 38.0 cases per 100,000 for males and 27.6 per 100,000 for females.

Figure 1 . Age-standardized incidence of HIV/AIDS between 1990 and 2019, categorized by gender.

The sex-specific trend of HIV incidence, as shown in Table 1 and Figure 2 , was calculated using the joinpoint regression analysis. We know from prior studies that age and gender have a significant influence on HIV incidence; therefore, we have performed gender and age-specific HIV incidence analyses ( Table 2 , Appendix Figure 1 ). The column headed with APC shows the incidence trend in each period, whereas the row headed with AAPC shows the overall trend in the entire period of three decades (1990–2019). Within the whole period, ASIR of HIV increased with an AAPC of 0.76 (95% CI: −0.50, 2.05) and 2.12 * (95% CI: 0.80, 3.45) among males and females, respectively; however, the overall increase in HIV incidence did not show any significant change, whereas, during the last three decades, increasing and decreasing annual percentage changes have been observed over the six segments as shown in Table 1 . For both genders, the highest annual percentage increase in HIV incidence was found in the period 1990–1992 and 1990–1993 with an APC of 70.61 (95% CI: 57.56, 84.75) among males and 68.90 (95% CI: 62.0, 76.09) among females, respectively. Furthermore, among females and males, the highest annual percentage decrease was found in segment 4 of Table 1 , with an APC of −17.05 * (95% CI: −17.92, −16.16) in males and −16.80 (95% CI: −17.97, −15.62) in females, respectively. The red segment in Figures 2A – C shows the insignificant annual percentage change in the incidence of HIV in all cases, whereas all other segments of Figure 2 show a significant annual percentage change in HIV incidence irrespective of their direction of change.

Table 1 . Trends in HIV incidence in India from 1990 to 2019 using the joinpoint regression analysis.

Figure 2 . (A) Sex-specific temporal trends in age-standardized incidence of incidence male HIV in India based on the jointpoint regression analysis (1990–2019). (B) Sex-specific temporal trends in age-standardized incidence of incidence female HIV in India based on the jointpoint regression analysis (1990–2019). (C) Sex-specific temporal trends in age-standardized incidence of both sexes HIV in India based on the jointpoint regression analysis (1990–2019). *Indicates that the Annual Percent Change (APC) is significantly different from zero at the alpha = 0.05 level. Final selected model: five joinpoints.

Table 2 . Average annual percentage change (AAPC) of HIV incidence in India by age and gender from 1990 to 2019 using the joinpoint regression analysis.

Additionally, age-specific joinpoint analysis shows that for some ages, such as 20–24, 50–54, 55–59, 60–64, 65–69, and 70–74 years, men were having significantly positive average annual percentage change irrespective of the fact that overall AAPC value among men does show the significant increase, whereas, at most ages, a significant increase in HIV incidence was observed for females except in the age groups 70–74 and 75–79 years ( Table 2 ). Overall, younger (15–24 years) and older (55–69 years) women experienced a higher burden of HIV incidence in the last three decades ( Table 2 , Appendix Figure 1 ).

The relative contribution of age, period, and birth cohort effect on HIV incidence in India is displayed in Figure 3 and Table 3 . The APC-IE analysis estimated coefficients for the age, period, and cohort effects ( Appendix Table 1 ). Furthermore, these coefficients were then calculated to their exponential value [exp(coef.) = ecoef.], which denotes the incidence relative risk (RR) at a particular age, period, or birth cohort relative to each average level ( Table 3 ).

Figure 3 . (A) The incidence relative risks of HIV/AIDS due to age. (B) The incidence relative risks of HIV/AIDS due to period effects. (C) The incidence relative risks of HIV/AIDS due to cohort effects.

Table 3 . Incidence relative risks of HIV/AIDS due to age, period, and cohort effects.

Figure 3A displays the relative risk of age effect adjusted by period and birth cohort effects which were found to be statistically significant for both sexes. The result from the age effect shows that the risk of HIV incidence among both genders increased sharply from ages 15–19 to 20–24 years. Thereafter, the risk of HIV incidence started decreasing at a higher pace between the ages of 20–24 and 50–54 years. It was also noted that the risk of HIV incidence among males was relativity higher in comparison with females except for some ages, for instance, females of age 15–19 years were having 1.4 times higher risk of HIV incidence in comparison to male counterparts in the same age strata. Similarly, women of age 75–79 years were at a 4.7 times higher risk of HIV incidence in comparison to males of the same age group. For the net age effect from the 15–19 to 75–79 age group, the risk of HIV incidence decreased by 91.1% among males and 70.1% among females ( Table 3 ).

Period effect

The relative risk of period effect adjusted by age and birth cohort effect was statistically significant for both sexes in cases of HIV incidence ( Figure 3B , Table 2 ). A sharp increase in the incidence was noted from the period 1990–1994 to 1995–1999. Thereafter, the decreasing risk of HIV incidence was also observed among both sexes from the period 1995–1999 to 2005–2009 followed by a nearly unchanged risk of incidence till 2015–2019. During the entire period from 1990–1994 to 2015–2019, the RR of HIV incidence decreased by 36.2 and 33.7% in males and females, respectively, which indicates the decreasing incidence of HIV among both sexes with an advancing time.

Cohort effect

The birth cohort effect shows that HIV incidence risk increased in the cohort from 1920–24 to 1955–1959 and subsequently decreasing risk has been noted from 1955–1959 to 1980–1984 in males and females ( Figure 3C , Table 3 ). From the earlier birth cohorts 1915–1919 to more recent birth cohorts 2000–2004, the RR of HIV incidence decreased by 37.5% in males and 35.5% in females.

In monitoring the transmission patterns of disease, designing prevention interventions, and determining the key population for health policy and planning, an accurate estimate of HIV incidence by age and sex is crucial. In the present study, we aimed to estimate the gender disparities in HIV incidence and performed an APC model to estimate the age, period, and cohort effects on the incidence of HIV in India in the period 1990–2019. Our findings demonstrated an increase in HIV incidence in the previous years, i.e., 1990–97, and a considerable decline in new infection rates in the last two decades was observed. These findings are comparable with the trends observed in other regions of the world and India ( 28 , 29 ). A global study based on GBD reported a decline of 3.0% in age-standardized new HIV infections in the period 2007–2017 ( 30 ). India has been working tremendously to eradicate HIV/AIDS and has undertaken various interventions and scaled-up prevention strategies under the NACO in 1992. A comparative study of HIV/AIDS policy reported that different outcomes of HIV/AIDS prevention are mostly due to differences in policy statements, financial stability, and commitments of the government and available healthcare infrastructure ( 31 ). Gay men, men who have sex with men, people who use injected drugs, and sex workers are the predominantly affected groups in countries such as the USA, UK, Australia, and India. Integration of family planning and counseling and testing for HIV at health facilities has improved voluntary counseling and testing uptake. For instance, Uganda's national response to HIV/AIDS focusing on risk reduction behavior was responsible for reductions in new HIV infections ( 32 ).

Higher incidence rates of the infection were seen among males with the gender gap narrowing down in recent years. Patterns of declining HIV incidence rates were observed across both sexes in the country. With the progress of time, age-standardized incidence rates have been higher among females than males. Furthermore, the results from age-specific joinpoint regression analysis indicated that in the last three decades, women were bearing a significantly higher burden of HIV incidence than men. These findings are in line with the instances from South India and South Africa where a declining incidence of HIV infection was observed; however, the incidence is higher among males than females ( 28 , 33 , 34 ). Yet, it should be noted that a persistent HIV/AIDS epidemic may prompt risk reduction behavior in survivors after the passing of close family members in the family, neighborhood, or community ( 32 ). The disproportionate decreases in HIV incidence remain broadly in line with a gender disparity in primary and secondary prevention service utilization in the study region ( 35 ). Additionally, it is plausible that men have higher levels of ART coverage which has led to larger declines in the overall incidence ( 28 ).

Our findings revealed that the age-specific HIV incidence has decreased over time in all ages; however, the size and timing of this fall differed between ages and sexes. Over time, the age pattern of incidence flattened across ages. The relative risk of incidence peaked at ages 20–24 years for both men and women and then declined subsequently. Surprisingly, women in the age group of 75–79 years were at higher risk of HIV incidence than their male counterparts. Previous studies have highlighted that widowed/divorced/separated women who live alone and those engaged in a high-risk activity are at an increased risk of acquiring HIV and thus require a special provision in older ages. The effect of age-adjusted by period and birth cohort effect indicated that adolescent females (15–19 years) were at higher risk of HIV incidence in comparison to their male counterparts. This suggests that HIV incidence was significantly affected by age among males and females. In line with our findings, a cross-country systematic review and meta-analysis conducted by Birdthistle et al. showed that adolescent females had higher HIV incidence rates than their male peers in several countries ( 36 , 37 ). Young women are identified to have a higher risk of HIV infection than young men in some settings ( 30 ). This has been linked to social and cultural factors such as poverty, less education, and poor access to information deterring young women from accessing sexual and reproductive health services ( 9 ). Previous studies conducted across the world have mixed shreds of evidence. Ma et al. reported a higher burden of HIV incidence among women in other parts of the world ( 38 ). In contrast, a cohort study in India reported higher incidence rates among men than women ( 39 ). This raises the urgent need of promoting health education and raising awareness of HIV prevention among the young population. Changes in the sex structure of the country and higher HIV infections among men are probably the reason for a large gender gap in HIV/AIDS incidence in China and the US ( 40 , 41 ). Moreover, at higher ages, women aged 45–64 years and the oldest women (75–79 years) were at higher risk of HIV incidence than their male counterparts. Menopause causes vaginal dryness, which encourages micro-injuries that raise the risk of sexually transmitted disease transmission in women aged 50 years and above ( 42 ). The occurrence of age-related AIDS alters throughout time as a result of modifying risk factors (e.g., implementation of preventative healthcare programs and changes in individual behavior).

Because period effects can have an impact on various age groups and persons from different birth cohorts throughout different years can also influence the period relationship, interpreting them separately can be challenging ( 43 ). The period relative risk of HIV incidence displayed decreasing patterns which are in line with a cross-country study conducted by Martial and colleagues ( 44 ). The variations within countries in trends of HIV/AIDS could be explained by the governments' tardy identification of the HIV/AIDS epidemic and the absence or ineffectiveness of control programs that lack political commitment ( 32 ). It was observed that the risk of HIV incidence among females was consistently higher than that among males during the period 1995–1999 and 2005–2009 which conforms to the results of other studies ( 37 ). The imbalance of power between men and women limits their decision-making capacity to the sexual behavior of their partners often making women more vulnerable to HIV/AIDS ( 45 ). Additionally, the adjusted risk of HIV incidence has declined consistently after the period 1995–1999. The authors of a study found a similar decreasing trend in AIDS incidence over the time 1998–1999 ( 46 ). Period effects are mostly observed when some changes take place with new interventions being independent of age and cohort ( 47 ). Improved healthcare systems, education, correct knowledge regarding ways of HIV transmission, and developed HIV prevention programs might have led to a decline in new HIV infections in the country. The decline in the RRs of HIV incidence can be justified by the fact that India established NACO in the year 1992 and free ART was introduced in the year 2004. The increase in HIV/AIDS awareness campaigns and educational efforts has sparked a conversation about how sexual health might have helped in deflating the HIV incidence in recent years ( 48 ). Moreover, flexibility and adoption of new strategies and increase in coverage of services have been part of the government programs.

The cohort effect denoted the declining risk of HIV incidence in the recent birth cohorts for both sexes ( 44 ). However, much of this decline took place among males than females. The highest incidence of HIV infection was observed among the 1955–1959 birth cohort among males and the 1960–1964 birth cohort among females. Decreasing rates of incidence of the disease have been observed in people born between 1950 and 1964 in Spain and Brazil ( 33 , 49 ). The decline in the incidence rates at younger ages is indicative of the effectiveness of prevention options as a national response ( 32 ). A cohort-based study conducted in a South African setting also witnessed an early and large decline in HIV incidence among men than women ( 28 ). The introduction of a local VMMC program and the scaling up of national testing and counseling services contributed to this decline in Africa. Unprotected sexual intercourse and engagement in sexually risky behavior might have caused an increased risk of HIV among older cohorts ( 50 ). In contrast, researchers are of the view that the population in the young age group has much freedom of thought, speech, and choices which makes them more vulnerable to getting hooked to common risk factors of HIV ( 51 ). The majority of lifestyle-related risk factors are more evenly distributed among people of the same generation (birth cohort). In recent decades, there have been significant biological and behavioral improvements in HIV prevention, diagnosis, and treatment which can be linked to a decline in the incidence rates in the recent cohorts.

To conclude, our results indicated that India is witnessing a decline in the number of new HIV infections in recent years for males and females. However, the decline is steeper for males than for females. This decline indicates the influence of policy and prevention strategies leading to improvements in the behavioral aspect. Our findings highlight the necessity of providing older women and young women at risk of HIV with effective HIV prevention. Furthermore, a higher incidence rate among young women emphasizes the need for large-scale HIV primary prevention efforts for teenage girls and young women. Since the extensive spread of HIV/AIDS is influenced by socio-economic factors, the reductions in risky behaviors pulled down the incidence rates among younger ages.

Data availability statement

The datasets presented in this study can be found in online repositories. The names of the repository/repositories and accession number(s) can be found at: https://vizhub.healthdata.org/gbd-results/ .

Author contributions

NS, MS, and PP contributed in conceptualizing the study. NS, KB, DD, MS, RJ, and PP were responsible for the analysis. All authors contributed to the interpretation of the data, critically revised all versions of the manuscript, and approved the final version.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpubh.2023.1093310/full#supplementary-material

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Keywords: HIV, incidence, age–period–cohort, GBD, joinpoint regression analysis, India

Citation: Shri N, Bhattacharyya K, Dhamnetiya D, Singh M, Jha RP and Patel P (2023) Long-term trends of HIV/AIDS incidence in India: an application of joinpoint and age–period–cohort analyses: a gendered perspective. Front. Public Health 11:1093310. doi: 10.3389/fpubh.2023.1093310

Received: 08 November 2022; Accepted: 06 April 2023; Published: 16 May 2023.

Reviewed by:

Copyright © 2023 Shri, Bhattacharyya, Dhamnetiya, Singh, Jha and Patel. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Priyanka Patel, patelpriyankacsb@gmail.com

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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Indian effort needed to end AIDS as a global public health threat by 2030: UNAIDS

New hiv infections in india fell 44% and aids-related deaths fell 80% between 2010 and 2023, both better than global average; however, 185 indians were infected each day last year, says unaids director.

Updated - October 03, 2024 07:55 pm IST - NEW DELHI

Eamonn Murphy, Director, Regional Support Teams for Asia Pacific and Eastern Europe and Central Asia regions. Photo: unaids.org

Without India doing a large part of the heavy lifting, it is unlikely that the world will meet the Sustainable Development Goal of ending AIDS as a public health threat by 2030, said Eamon Murphy, UNAIDS director for the Asia Pacific and other regions, in a written interview with The Hindu .

Noting that India has demonstrated high commitment and positive results in the last decades, he said that annual new HIV infections have fallen 44% between 2010 and 2023, better than the global average. However, HIV prevention efforts will need to be accelerated if India is to close the gap with a focus on specific States and districts, he said.

The UNAIDS director emphasised that the next five years will be critical for the country to accelerate efforts and share its experience with other countries in the region.

OPINION | The ART of India’s HIV/AIDS response

‘Prevention is key’

Dr. Murphy, who was recently in India to discuss the challenges in HIV prevention with the Central government and other stakeholders, said that planning for long-term sustainability beyond 2030 is crucial to preserving the gains made and ensuring that the impact is durable and transformative.

“To achieve the goal of ending AIDS as a public health threat by 2030, we must not only diagnose and successfully treat people living with HIV but also dramatically lower new infections. Prevention is key. Every new infection means a person requires treatment for life. So, for a sustainable HIV response we must focus more on prevention. We must also ensure that there are sustainable health systems for HIV and health which are co-designed and co-implemented by communities and civil society so they respond to people’s needs,’’ he said.

Dr. Murphy noted that last year, there were 68,000 new infections in India, meaning that around 185 people were infected every day. “The global AIDS strategy calls for 80% of prevention services to be delivered by community-led organisations that are best placed to reach key populations. These organisations need the right space and resources to lead,’’ he said.

Also Read | AIDS can be stopped with science-backed tools

Access to new treatments

India has made notable progress in reducing annual AIDS-related deaths by nearly 80% between 2010 and 2023, which is also above the global average, he said.

UNAIDS is currently advocating for new technologies, including long-acting injectables, to reach all patients at affordable prices, he added.

Published - October 03, 2024 07:42 pm IST

Related Topics

AIDS / health / United Nations / Sustainable Development Goals

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Why progress against HIV/AIDS has stalled among Hispanic and Latino Americans

While the United States has made considerable progress fighting the HIV/AIDS crisis since its peak in the 1980s, headway has not been equal among racial/ethnic groups.

Overall, HIV rates have declined in the U.S. and the number of new infections over the last five years has dropped among Black Americans and white Americans. However, Hispanic and Latino Americans have not seen the same gains.

Between 2018 and 2022, estimated HIV infections among gay and bisexual men fell 16% for Black Americans and 20% for white Americans, according to data from the Centers for Disease Control and Prevention . Meanwhile, Hispanic Americans saw rates held steady, the CDC said.

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There may be several reasons for the lack of decline, including Hispanic Americans facing health care discrimination, experts told ABC News. Some may also face the stigma that prevents patients from accessing services or makes them feel ashamed to do so. There is also a lack of material that is available in their native language or is culturally congruent, experts said.

"Where we are in the HIV epidemic is that we have better tools than ever for both treatment and for prevention, and we have seen a modest slowing in the rate of new infections, but we have seen a relative increase in the rate of new infections among Latino individuals, particularly Latino men who have sex with men," Dr. Kenneth Mayer, a professor of medicine at Harvard Medical School and medical research director at Fenway Health in Boston, told ABC News.

"So, the trends are subtle, but they're concerning because it does speak to increased health disparities in that population," he continued.

Hispanic Americans make up more cases and more deaths

Although Hispanic and Latino Americans make up 18% of the U.S. population, they accounted for 33% of estimated new HIV infections in 2022, according to HIV.gov , a website run by the U.S. Department of Health and Human Services. This is in comparison with white Americans, who make up 61% of the U.S. population but just 23% of HIV infections.

Hispanic and Latino gay men currently represent the highest number of new HIV cases in the U.S.

What's more, Hispanic males were four times likely to have HIV or AIDS compared to white males in 2022 and Hispanic females were about three times more likely than white females to have HIV over the same period, according to the federal Office of Minority Health (OMH).

Additionally, Hispanics males were nearly twice as likely to die of HIV Infection as white males and Hispanic females to die of HIV Infection in 2022, the OMH said.

MORE: People with HIV at higher risk of COVID reinfection: CDC

Erick Suarez, a nurse practitioner and chief medical officer of Pineapple Healthcare, a primary care and HIV/AIDS specialist located in Orlando, Florida, told ABC News that watching the lack of progress made in the HIV/AIDS crisis for the Hispanic and Latino population is like "traveling back in time."

"When I say traveling back in time for the Hispanic/Latino population with HIV, I mean [it's like] they are living before 2000," he said, "Their understanding of treatment and how to access it is in that pre-2000 world. … The state of HIV and AIDS in the Hispanic/Latino population in the United States right now is a few steps back from the general American population."

He said many Hispanic/Latino HIV patients come to the United States unaware of their HIV status. If they are aware of their status, they come from countries where prevention and pre-exposure prophylaxis (PrEP) is hard to find or doesn't exist.

When they get to the United States, they be afraid or unsure of where or how to access health care. Even Hispanic/Latino Americans whose families have been here for generations, have trouble accessing health care due to racial and ethnic disparities, Suarez said.

Previous research has shown Hispanic/Latino Americans with HIV reported experiencing health care discrimination , which could be a barrier to accessing care.

Facing discrimination, stigma

Hispanic and Latino patients with HIV report facing discrimination in health care, experts told ABC News. A CDC report published in 2022 found between 2018 and 2020, nearly 1 in 4 Hispanic patients with HIV said they experienced health care discrimination.

Hispanic men were more likely to face discrimination than Hispanic women and Black or African American Hispanic patients were more likely than white Hispanic patients to face discrimination, according to the report.

There may also be stigma -- both within the general population and within their own communities -- associated with HIV infection that could prevent patients from accessing services, according to the experts.

Suarez said one of his most recent patients, who is Cuban, traveled two hours to a clinic outside of their city to make sure no one in their familial and social circles would know their status.

"The interesting part is that even though I speak with them like, 'You understand that everything that happens within these walls is federally protected, that it is private information. No one will ever know your information, and our goal is for you to get access healthcare. You can do this in your own city,'" Suarez said.

"Now, because of the stigma, they will travel long distances to avoid contact with anyone and make sure that no one knows their status. So, stigma is a huge factor," he continued.

Rodriguez said this stigma and mistrust has led to many Hispanic and Latino Americans to not seek medical care unless something is seriously wrong, which may result in missed HIV diagnoses or a missed opportunity to receive post-exposure prophylaxis, which can reduce the risk of HIV when taken within 72 hours after a possible HIV exposure.

Making resources 'available, attainable and achievable'

Experts said one way to lower rates is to make information on how to reduce risk as well as how to get tested and treated available in other languages, such as Spanish, and making sure it is culturally congruent.

However, Rodriguez says translating documents is not enough. In the early 2010s, when the CDC was disseminating its national strategy to reduce HIV infection, the agency began to circulate materials on how to reduce HIV incidence, reducing stigma and increasing use of condoms for sex, Rodriguez said.

He said that of a compendium of 30 interventions, maybe one was in Spanish. When he took the materials back to his native Puerto Rico, many were having trouble understanding the materials because it has been translated by someone who is of Mexican heritage.

Secondly, rather than the materials being written in Spanish, they had been translated from English to Spanish, which doesn't always translate well, Rodriguez said.

"When we talk about Hispanics, we have to talk about, first of all, the culture. Our culture is very complex. Not one Spanish language can speak to all of the Hispanic communities," he said. "And then we also have to look at the generations of Hispanics. Are you first generation, second generation, third generation? "

MORE: HIV tests dropped by one-third during COVID-19 pandemic: CDC

He added that the key is making resources "available, attainable and achievable."

This month, the White House convened a summit to discuss raising awareness of HIV among Hispanic and Latino Americans and to discuss strengthening efforts to address HIV in Hispanic and Latino communities.

Mayer said it's also important to make sure information is disseminated on social media that is culturally tailored for Hispanic and Latino experiences.

"It's important for social media to seem culturally relevant, to make sure that they understand that HIV is not just a disease of old white guys, and that they may have a substantial risk," he said. "Make sure that they're educated by what they can do to protect themselves since we have highly effective pre-exposure prophylaxis, and we have ways to decrease STIs with a doxycycline post-exposure prophylaxis.

The experts added that having more Hispanics and Latinos represented in medicine, research and public health may encourage more Hispanic and Latino Americans with HIV or at risk of HIV to seek care or treatment.

"Seeing and being able to recognize that your healthcare provider looks like you, sounds like you, in some way it represents you, is a key aspect of getting people on treatment and access,' Suarez said. "And not only that, but keeping them in treatment and having them come back and stay and keep that going, that's a key issue."

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• v.82(971); 2006 Sep

AIDS in India

Short abstract.

Contributing factors to the epidemic are discussed and suggestions made for its management.

HIV infection in India was first detected in 1986 among female sex workers in Chennai. 1 Today, with an estimated 5.134 million infections, 2 India is home to the second largest population of people living with HIV and AIDS (PLHA). This article describes the state of the epidemic in India, the main contributing factors, and suggestions for changes that should be made in the management of the epidemic.

The executive director of the Global Fund for AIDS, TB and Malaria, suggested that in 2004, India overtook South Africa in having the largest number of people living with HIV/AIDS in the world. 3 The true prevalence of HIV in India is still debatable. Some of the available estimates of incidence have been carried out among sex workers in Maharashtra (22.1 per 100 person years) and drug users in Chennai (4.53%). 4 , 5 There is an urgent need for more studies estimating incidence of HIV in India. The case reporting system for HIV in the country requires improvement as sentinel surveillance has detected HIV in states that had not reported any infections.

At risk populations

Although the epidemic was initially described among sex workers, the prevalence of HIV among sex workers has more or less stabilised 6 because of targeted interventions, increased condom use, and empowerment strategies that encourage sex workers to demand safe sex from clients. Meanwhile, housewives with single partners are gradually accounting for a larger proportion of infections. 7 , 8 These monogamous women are primarily put at risk by the extramarital sexual behaviour of their husband, from whom their infection is most probably acquired. The housewife is becoming the new face of the epidemic in India; a trend that necessitates research on microbicides and other female controlled HIV/STD prevention technologies.

Voluntary counselling and testing

Data clearly show that HIV has spread to all groups of Indian society. 9 Over 90% of those infected with the virus are not aware of their status. 10 Most diagnoses occur at late stages of the disease. 11 While the number of voluntary counselling and testing centres is on the rise in both government and non‐governmental settings in India, facilities have been underused because of (a) inaccurate perceptions of personal risk (b) a widespread belief that HIV is restricted to high risk populations such as sex workers, drug users, and truck drivers and (c) the persistence of stigma surrounding HIV.

Antenatal women and surgical patients routinely undergo a HIV antibody test in most medical institutions. On the basis of a positive result, health care is often denied to patients. In such situations, the test is often not adequately discussed with patients and a risk assessment not carried out. The possibility of a patient having a false negative test result is thus overlooked; consequently, necessary post‐exposure prophylaxis for an occupational risk may be withheld. 12

Treatment, care, and support

Treatment guidelines.

HAART is started in India based on the WHO criteria: absolute CD4 count <200 cell/µl, patient has an AIDS defining illness or CD4 200–350 with opportunistic infections. Before the introduction of CD4 counts, WHO staging of disease was used to start HAART. However, today, WHO staging for initiation of HAART is restricted to rural areas where CD4 estimation is not available. The most common first line regimen is a fixed dose generic combination of stavudine (d4T) + lamivudine (3TC) + nevirapine (NVP). All NNNRTIs and NRTIs that are currently used in developed settings are being manufactured on a large scale by generic producers in India. Most of the PIs are also manufactured by Indian pharmaceutical companies. The commonly used agents have been evaluated for their safety, efficacy, and tolerability among Indian patients with encouraging results. 13 , 14

Accessibility

It is essential to strengthen all testing protocols to include referral of HIV positive clients to well established treatment, care, and support facilities. Anecdotal evidence suggests that the disclosure of a positive test result in the absence of proper guidance and counselling may lead some patients to access inappropriate medical treatment, suffer depression, contemplate or commit suicide, and even engage in high risk activities with intent to further transmit their infection.

The 3×5 initiative marked a shift in thinking in the response 15 to the HIV/AIDS epidemic: it brought urgency to treatment and a commitment of public resources that were until that point only spent on prevention of HIV. Under this initiative, globally, WHO/UNAIDS aimed to rapidly scale up HIV/AIDS treatment and care to three million people in developing countries by the year 2005. In India, NACO has committed to providing free antiretrovirals to 100 000 persons under this initiative by the year 2007. As of 2005, about 35 000 patients in public and private sectors were receiving HAART.

There is a lack of trained HIV physicians in India. Few hospitals and physicians provide health care for people living with HIV/AIDS, partly because of reluctance among healthcare personnel to deliver treatment to this population. Reasons for this reluctance include personal values and prejudices, an inaccurate perception of occupational risks entailed in health care, and the belief that HIV negative patients will refuse to share health care facilities with people living with HIV.

Antiretroviral agents

Antiretroviral (ARV) agents are widely available in India. ARV drugs may be prescribed by any physician and many pharmacists dispense such drugs without prescription; some patients have been prescribed suboptimal doses of drugs. Given that medical insurance does not cover AIDS treatment and there are comparatively few, and geographically widespread, free government ARV supplying centres, most patients fund their own treatment. Faced with financial constraints and being unaware of the implications of suboptimal doses, patients often buy one or two of the three drugs prescribed. Many persons taking ARV treatment are transient users and poorly adherent.

Such mono/dual therapy or suboptimal adherence has been linked with an increased risk of development of drug resistance thereby limiting future options for care. The emergence of drug resistant viral strains 16 could severely affect and even wipe out the competitive advantage provided by the generic drugs offered by Indian pharmaceutical companies.

To prevent the realisation of this situation, the number of free ARV supplying centres needs to be increased and access improved. The distribution of ARV agents must also be better regulated; physicians should be accredited to prescribe HAART and pharmacists made to comply with the Indian Drug Act (1940) that prohibits the sale of specified drugs without prescriptions.

Patients are often maintained with HAART without adequate CD4 monitoring arising from a lack of affordability, poor laboratory infrastructure in the public sector, and disregard of treatment guidelines. This can be life threatening in certain instances such as the use of NVP in men with CD4 over 400 or women with CD4 higher than 250.

Affordability

Highly active ARV therapy has improved the survival of persons living with HIV and AIDS the world over. 17 A precipitous decrease in the cost of HAART was made possible by the successive introduction of generic versions. Of note is the impact on first line drugs. For example, stavudine + lamivudine + NVP that cost about US$740 per month in 1998 became available for less than US$20 in 2005. However, given that the per capita income of India is US$620 per year, 18 even this regimen is unaffordable for most patients infected with HIV. While the reduced cost of such generic drugs permitted the initiation of HAART in the country, 19 this regimen is now almost never used in more economically developed countries because of the availability of newer and less toxic agents.

Coinfections

High rates of coinfections among people living with HIV/AIDS complicate the management of HIV. HBV/HCV coinfection is widely prevalent among HIV infected injecting drug users. 5 Tuberculosis (TB) is also highly prevalent among HIV infected persons in India, especially those with lower CD4 counts. 11 There have also been reports of high rates of coinfection with Kala‐Azar in India. 20 The most commonly used regimens for HIV and TB include the drugs NVP and rifampin respectively, both of which are hepatotoxic and interact with each other resulting in suboptimal dosing.

Continuing medical education (CME) for physicians

CME for medical professionals is not mandatory in India. HIV disease management is dynamic and knowledge among physicians treating HIV is often dated or limited to the product promotion education that pharmaceutical representatives engage in. Rash and Steven‐Johnsons syndrome are still common in India as most physicians are unaware of how to dose escalate when starting a patient with a NVP containing regimen. Physicians are still unfamiliar with the principles of switching ARV agents in patients failing therapy. Physicians prescribing ARV agents should have a thorough understanding of the principles of HAART and should become familiar with laboratory tests that are relevant to HIV disease monitoring.

Adherence issues

The availability of fixed dose ARV combinations reduces pill burden and thus facilitates improved adherence. However, most people infected with HIV in India are poorly educated and do not understand the need to continue HAART when they feel better or when their CD4 counts have risen significantly. Interruption of therapy places them at a high risk for developing drug resistance; this occurs even more easily with NNRTIs, which have long serum half lives. Some temporarily stop treatment, restarting when adequate funding becomes available. 21 In sero‐concordant couples, where only one partner may clinically require HAART, they often share their drugs with their HIV negative partner or spouse. To achieve optimal adherence, clinics should evaluate and use a number of measures such as directly observed treatment, family counselling, and intensive patient education.

Second line ARV regimens

Less than 10% of the patients can afford a PI based regimen. Plasma viral load (PVL) measurement is almost never carried out because of financial constraints. A clinician usually identifies that a patient is failing therapy when successive CD4 counts show declines or when the patient starts developing new opportunistic infections. This can be a few months to years after virological failure and by this stage the patients could have accumulated enough mutations to render the remaining NRTIs, namely didanosine, abacavir, and tenofovir, useless. 22 , 23 If second line agents are to be more effectively and appropriately used in India, then PVL quantification must become a routine part of HIV monitoring. Low cost techniques to estimate PVL are an urgent requirement in resource constrained settings such as India. There are few studies in India evaluating the rates of treatment failure and drug resistance among patients. Drug resistance to 3TC among treatment naive patients has recently been reported by Sachdeva and colleagues. 24

Prevention of mother to child transmission of HIV

There are about 27 million live births per year in India. The government of India has introduced VCT for all ANC attendees in the public sector. In the private sector, HIV testing is carried out routinely for all pregnant women. The prevalence of HIV among antenatal women is 0.1 to 2.25% across the country. 25 Women found HIV positive in government centres are treated with a single dose of NVP at the onset of labour with one dose given to the child 72 hours after birth. Mothers are counselled about the risk of HIV transmission through breast feeding but the decision to use formula milk is left to the mother. 26

Success stories

Management of sexually transmitted infections (stis).

India has a high rate of STIs, an estimated 6% to 9% among the general population, roughly 40 million new infections a year. 27 STI, especially ulcerative STIs, increase the risk of HIV transmission. Appropriate management of STIs can reduce a person's susceptibility to HIV; STI treatment has been prioritised and has improved considerably in India. In rural areas where laboratory facilities are unavailable, syndromic management of STIs is being advocated. To strengthen this effort, diagnostic tests should be made more widely available.

Human rights issues

Physicians in India have always held a disproportionate power over their patients. Demands from activist networks of people living with AIDS to be treated with dignity, protected from discrimination by employers, and given access to education, care, and ARV drugs has led to an increase in general awareness about patients' rights.

Quacks and magic cures

Ineffective regulation of medical practitioners, patient ignorance, and an unwelcoming modern health sector, lure people living with HIV/AIDS towards quack doctors and magic cures. In 1997 the Delhi State government introduced the Delhi Quackery Prohibition Bill in the Assembly after reports that nearly 30 000 quacks were operating in the capital alone. 28 Little is known on the interactions between ARV drugs and the drugs dispensed by quacks. Patients often interrupt HAART to use such alternative medication or even engage in their concomitant use.

In the past 20 years, the country has made substantial investment in HIV prevention. In the past five years there has been significant scale up of VCT services and capacity building for care and support. While retaining this focus to prevent backsliding of prevention, the next decade should be devoted to developing excellence in HIV care, reducing stigma thereby permitting increased uptake of services and making additional efforts to tackle the disparity in distribution and affordability of ARV agents.

Acknowledgements

The authors thank Ms Claire S Hawcroft for reviewing the manuscript.

Abbreviations

ARV - antiretroviral

NVP - nevirapine

STI - sexually transmitted infection

• Open access
• Published: 30 September 2024

Trajectory of suicide among Indian children and adolescents: a pooled analysis of national data from 1995 to 2021

• Susangita Jena 1 ,
• Prafulla Kumar Swain 2 ,
• Rachel Elizabeth Senapati 1 &
• Subhendu Kumar Acharya 1  

Child and Adolescent Psychiatry and Mental Health volume  18 , Article number:  123 ( 2024 ) Cite this article

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Suicide is a major public health concern in India especially among children and adolescents. The yearly national statistics show a concerning trend of rising suicide deaths in these age groups.

The present study, taking 26 years of national data from the National Crime Record Bureau during 1995–2021, examined the trend, patterns, means, and modes of children/adolescent suicides in India. We also undertook a time series analysis by using ARIMA (0,2,1) model to forecast the expected suicide rate for the next one decade.

A rising trend of suicide rate among children and adolescents was observed in India over the last 26 years. The forecast indicates a continuance of rising suicide cases for the upcoming decade in India. A substantially different trend of suicide rate was observed among early and late adolescents indicating significantly high vulnerability of late adolescents. Among children /adolescents, the most common causes of suicide were family problems, academic failure, illness, and unemployment. Illness has emerged as one of the leading causes of suicide, with a significant rise over time. Poverty and unemployment were also found as the important contributors with a steadily increasing trend of suicide among children and adolescents facing these problems in recent years.

The study provides important analysis and information on suicide among children/adolescents in India, by providing useful insights for parents, teachers, policymakers, healthcare practitioners, and stakeholders aiming to prevent and control children and adolescent suicide and boost mental health. The study also provides important leads on risk factors with a forecast of suicide trends for the next 10 years.

Introduction

Suicide among children and adolescents is a significant public health concern globally, with wide-ranging social, political, and emotional implications [ 1 ] A pooled analysis of the Global School-Based Survey (GSHS) across 90 countries revealed a significant prevalence of suicidal ideation among 397,299 adolescents [ 2 ]. The majority of suicides occur in low- and middle-income countries (LMICs) in the world [ 3 ]; India witnessed a constantly rising suicide rate over the past three decades with the highest number of incidences in the world [ 4 ].

The suicide scenario among Indian children, adolescents and youth (< 30 years old) is highly alarming as it is their top leading cause of death [ 5 , 6 , 7 ] (Fig.  1 C). It is here noteworthy that India with 253 million children and adolescent age constitutes one-fifth and the largest proportion of the adolescent population in the world [ 5 ]. It has been observed that 40% of suicide deaths in men and 56% of suicide deaths in women occurred between 15 and 29 years of age [ 8 ]. A systematic review and meta-analysis revealed a high burden of psychiatric disorders among Indian adolescents in the community (6.5%) and school settings (23.3%) as well as urban (0.8–29.4%) and rural areas (1.60–5.84%) [ 9 ]. Recent reviews of risk factors of adolescent suicide scenarios in India revealed that the most frequently reported risk factors included; mental health problems, negative life issues, academic stressors, violence, economic distress, relationship factors, etc [ 10 , 11 ].

A , B and C ): Top 10 Countries with Highest Adolescent Population ( A ), Top 15 adolescent suicide reporting countries in the world ( B ), and T 26 years (1995–2021) suicide trend among children, adolescents, and Youth in India ( C ).

At the same time, mental health in India is also neglected and inadequately understood across all age groups [ 12 , 13 ]. Youths in India generally view suicide as morally unacceptable and heavily stigmatized [ 14 ]. Adolescents and their issues in Indian culture are not taken seriously as they are considered naive and exaggerated, for which they must be put to face life’s challenges, most importantly with the least support, to learn from adversities [ 15 ]. Furthermore, misconceptions surrounding mental health coupled with poor reporting, poor treatment-seeking practices, and non-adherence to treatment in case of psychiatric need/diseases are deep-rooted and widespread concerns [ 8 ].

As per our recent scoping review, there is a substantial gap in adolescent mental health research in India with a major vacuum of evidence around the status, major risk factors, and future risks of suicide at the national population level [ 10 ]. In this context, this study examines the detailed historical and recent trends and causes of children and adolescent suicide rates stratified by age and sex in India over the last 26-year period (from 1995 to 2021). Additionally, the paper also tries to understand the future trend of children and adolescent suicide by forecasting the suicide rate for the next 10 years by using time series data. The study based on previous reported findings and our primary experience aims to identify and contribute valuable insights to healthcare planning and suicide prevention programs.

Methodology

Study design and study settings.

The study employed a retrospective cross-sectional analysis design utilizing data on reported adolescent suicides across India for a period of 26 years from 1995 to 2021. The data indicates that there are nearly 0.2 million reported suicides during this timeframe.

Study participants

National Crime Record Bureau (NCRB) in its report “Accidental Deaths and Suicides in India (ADSI)” stratified and reported the suicide data on children up to 14 years of both male and females till the year 2023; from the year 2014 onwards, the age group for children and adolescent was extended up to 18 years. So, our analysis included the data accordingly.

Data source and data extraction

We collected the data from the NCRB, India, the primary body for gathering information on suicide incidences across India. National Crime Record Bureau (NCRB) is part of the Ministry of Home Affairs, Government of India and it releases yearly time series data on accidental deaths and suicides from the year 1969 onwards. All the states and union territories were covered during the study. For this study, we gathered data on children’s suicide for a period of 26 years (1995–2021) from NCRB annual reports on Accidental Deaths and Suicides in India (ADSI), freely available at https://ncrb.gov.in/en/adsi-reports-of-previous-years [ 16 ]. The data of the period 1995–2013 reported the year-wise suicide among children below 14 years of age with information on both causes and means of suicide. Year 2014 onwards, the NCRB reported suicide among children/adolescents up to 18 years old. However, they dropped the reporting of means and only reported the causes of suicide. So, we have analysed the data in two sets as 1995–2013 and 2014–2021 where required. We have also added a population figure at the time when the data was extracted for the analysis (Additional File 2).

Data have been extracted from NCRB reports, available as PDF documents, by two researchers (1st and 3rd authors). The year-wise suicide data was entered into a Microsoft Excel 2019 spreadsheet. The data extraction, validation, and entry were alternatively checked by two researchers (1st and 3rd authors) and were finally cross-checked by the corresponding author for consistency and correctness.

Ethical approval statement

This research paper does not require ethical approval; it involves a systematic analysis and presentation of available secondary data resources.

Statistical methods

The present study aimed to understand the patterns and trends of suicide among adolescents in India. We also intended to study the major risk factors in this process. In this context, we used descriptive analysis of the data to reach conclusions. We used various graphs to explain the patterns and trends of suicide in India; we used the adolescent population data available from UNICEF for calculating the country-wise adolescent population while the number of suicide was calculated by using the adolescent suicide rate and adolescent population of each country available from the same source [ 17 , 18 ]. By using the data available at NCRB, Government of India, we prepared the 26 years (1995–2021) suicide trend among adolescents and youth in India. The heatmap method was used to highlight the trends and patterns for various modes and means of children/adolescent suicide (Figs. 4 and 5). The primary purpose of a heat map is to quickly and intuitively highlight areas of high or low concentration within the dataset to indicate the risks. Based on our analysis of the 26 years of data, we identified the top leading factors causing suicide which we illustrated with line graphs.

We calculated yearly crude suicide rates per 100,000 populations with 95% confidence intervals using projected mid-year population estimates. Also, the crude suicide rate per 100,000 population and trends were described using joint point regression analysis to determine the major deviation in trend during the 26 years (1995–20221), utilizing the Joint Point Regression Program, Version 4.5.0.1 (Surveillance Research Program, National Cancer Institute, USA) [ 19 ].

Moreover, we undertook a time series analysis and forecasting of suicide trends (for the next 10 years) based on available data. Time series forecasting is a process of evaluating previous observations of a time series, which is a series of data points collected over time, in order to construct a model that accurately describes its underlying structure. The aim is to use this model to forecast expected future trends of suicide risks among Indian adolescents. One of the most popular and frequently used stochastic time series models is the Auto-Regressive Integrated Moving Average (ARIMA) model [ 20 ] which we used for the present analysis and forecasting purpose. The ARIMA model has been successfully applied in the field of health as well as in different fields in the past due to its simple structure, fast applicability, and ability to explain the data set. The ARIMA model combines these three components to create a powerful forecasting tool. It considers past suicide rates (AR), adjusts for potential trends (I), and accounts for random fluctuations (MA) to provide a more accurate forecast of future suicide risk.

The statistical analysis and forecasting were carried out using various software tools, including Microsoft Excel 2019, and R software version 3.6.2.

The proportion of India’s adolescent population to that of the world, as per the recent data, stands highest at 253 million among all the countries followed by China at 168 million (Fig.  1 A). The number of suicides among Indian adolescents stands the highest (10,730) than the second highest reporting country, Pakistan (2421) followed by China (Fig.  1 B). As per the last 26 years of NCRB reports, 1,34,735 reported children and adolescents died by committing suicide in the country. By adjusting the data discrepancy, it can be observed that 1.3 million deaths among children and youth combined took place due to suicide during the same period. This number is about 40% of the approximately 3.3 million total suicides (including all age groups) in the country that happened in India during these 26 years (Fig.  1 C).

Trends of children and adolescent suicide in India (1995–2021)

Figure  2 illustrates the trends in children and adolescent suicide rates in India from 1995 to 2021. Where Fig.  2 A describes the Trend in children and early adolescent suicide in India from 1995 to 2013, and Fig.  2 B describes trends in Children and adolescents suicide in India from 2014 to 2021. The Bar graphs highlight a significant increase in the suicide rate among these vulnerable populations over 26 years. In Fig.  2 A, the data on children and early adolescents from 1995 to 2013 shows a fluctuating suicide rate between males and females each year. However, Fig.  2 B reveals a shift in the trend after 2014, indicating higher suicide rates among female children and adolescents compared to males. The latest data in 2021 shows that approximately 5075 males and 5655 females in India in this age group died by suicide.

Historical and recent trends in children and adolescent suicide rate in India

Table  1 represents the data on yearly crude suicide rates per 100,000 population from 1995 to 2021 revealing significant fluctuation over the period. In the late 1990s, the rates were relatively similar, with a slight peak in 1999 at 7.53 [95% CI: 7.29, 7.78] and a dip in 1997 at 6.52 [95% CI: 6.28, 6.75]. A notable decline was observed from 2001 to 2008, with the lowest rate recorded in 2008 at 4.72 [95% CI: 4.53,4.91]. However, starting from 2009, there is a clear upward trend, culminating in a dramatic increase from 2014 onwards. The most substantial rise occurred in 2015, with a rate of 18.67 [95% CI: 18.29, 19.04], which continued to escalate, peaking in 2020 at 23.8 [95% CI: 22.6, 23.50]. A slight decrease was seen in 2021 with a rate of 21.9 [95% CI: 21.49, 22.31]. this trend indicates a worrying increase in suicide rates over the last decade.

We calculated annual percentage changes (APC) and average annual percentage changes (AAPC) in suicide rates by gender and years using the Joint Point Regression Analysis model (Fig.  3 ). Here, the positive value of APC suggests an increasing trend, and the negative value of APC suggests a decreasing trend. The analysis of suicide rates over different periods reveals significant insights into trends among males, females, and the total population (Fig.  3 ).

Annual percentage changes (APC) and average annual percentage changes (AAPC) in suicide rates by gender and years using joint point regression analysis

For males, the APC from 1995 to 2012 was − 1.0% [95% CI: -2.2, 0.2], indicating a decreasing trend, though not statistically significant (t = -1.8, p  = 0.090). This trend reversed sharply from 2012 to 2015, with an APC of 53.3% [95% CI: 8.1, 117.4], showing a significant increase (t = 2.6, p  = 0.019). From 2015 to 2021, the trend stabilized with an APC of 0.1% [95% CI: -5.7, 6.2] (t = 0, p  = 0.981). The average annual percentage change (AAPC) for the entire period was significant at 4.4% [95% CI: 0.2, 8.7].

Among females, the APC from 1995 to 2012 was − 1.6% [95% CI: -2.5, -0.7], reflecting a significant decreasing trend (t = -3.8, p  = 0.001). However, from 2012 to 2015, there was a significant increase with an APC of 57.8% [95% CI: 22, 104.1] (t = 3.7, p  = 0.001). The period from 2015 to 2021 showed a non-significant increase with an APC of 2.1% [95% CI: -2.3, 6.6] (t = 1, p  = 0.337). The AAPC for females over the entire period was significant at 4.8% [95% CI: 1.7, 8].

For both genders combined, the APC from 1995 to 2012 was − 1.5% [95% CI: -2.5, -0.5], indicating a significant decreasing trend (t = -3.2, p  = 0.004). This was followed by a significant increase from 2012 to 2015 with an APC of 49.3% [95% CI: 11.9, 99.1] (t = 2.9, p  = 0.009). From 2015 to 2021, the trend showed a non-significant increase with an APC of 4.6% [95% CI: -0.3, 9.8] (t = 1.9, p  = 0.067). The AAPC for the combined population was significant at 4.8% [95% CI: 1.3, 8.3].

Patterns of modes of suicide among the children and adolescents

NCRB reported the various modes of suicide among children below 14 years of age from the year 1995 to 2013 (Fig.  4 ). However, data on the modes of suicide was discontinued from 2014 onwards. We analyzed the major modes of suicide among children under 14 years from the available data in the NCRB record. It was observed that hanging was the most common method of suicide among children (< 14 years) in India, accounting for 27.87% of all methods in the year 2013 among both males and females. This trend remained consistent from 1995 to 2013 (Fig.  4 ). The other prevalent mode of suicide among Indian children was suicide by consuming poison, which accounted for 17.15% of all suicides among children (< 14 years) only in India in 2013 in both genders. These modes of suicide involve ingesting a toxic substance, such as pesticides or drugs. Suicide by drowning was notable in number accounting for 16.41% of all reported cases in 1995, which later decreased to around 3% by 2013. Suicide by fire/self-immolation during 1995 was comparatively high in number, but afterward, it steadily decreased and by 2013, it accounted for 7% of all reported modes. Jumping from a height is another mode of suicide that is prevalent among Indian children, which according to NCRB data, accounted for 2.13% of all reported suicides in 2013. Firearms, touching electric wires, and coming under running vehicles/trains are relatively less prevalent methods (overall accounting for 4.24%) along with jumping from a height (accounting for 2.13%) among Indian children in this age group in 2013.

Year-wise reported suicide among children and adolescents (below 14 years) from 1995 to 2013 according to the mode of suicide

There was also observed a gender perspective in the rising suicide scenario particularly in terms of adopted modes. With the rise of suicide among both males and females, hanging was the most common mode of suicide among both male and female children. However, poisoning was more prevalent among female children, accounting for 21% of all suicides among them (< 14 years) only in the year 2013, compared to 13.6% among male children. Overall retrospective data from 1995 to 2013 shows that suicide by consuming poison was decreasing in both genders.

Cause-wise reported suicide among children and adolescents in India

Figure  5 depicts the heat map describing the distribution of reported suicides among children and adolescents over the years based on various causes. This figure is represented in two parts, the first part covers the period from 1995 to 2013 focusing on children and early adolescents (below 14 years old), while the second part covers the period from 2014 to 2021, focusing on the cause of suicide among children and adolescents (below 18 years old). It can be observed that academic failure, family problems and related issues, love affairs, and illness were the major reasons for suicide among both male and female adolescents in India. Unknown causes and other undefined causes were observed to present a significant section of suicide. As per the trend observed in this analysis, academic failure as a risk of suicide among male adolescents has reduced from 13% during 1995–1999 to 11.1% during 2000–2005 and 9.4% during 2006–2010, while a significant rise was reported with 20.8% during 2011–2015 and 45.5% during 2016–2021. Family problems and related issues have decreased from 7.7% during 1995–1999 to 7.4% during 2000–2005 and 6.8% during 2006–2010 but it has increased to 16.4% during 2011–2015 and 61.4% during 2016–2021. From the year 1995–1999, illness as a causative factor decreased from 13.8 to 11.6% during 2000–2005 and 10.5% during 2006–2010; however, during 2011–2015, the suicide rate due to illness among males rose to 18.7% and this trend during 2016–2021 has significantly increased by 45.1%.

Year-wise reported suicide among children and adolescents according to the causes of suicide from 1995-2021

Considering female suicide, academic failure caused cases have decreased from 14.3% during 1995–1999 to 13.5% during 2000–2005 and 10.8% during 2006–2010; however, during 2011–2015 female suicide due to academic failure again increased by 12.9% and this trend during 2016–2021 further raised by 48.2%. Suicides among female adolescents due to family problems and related issues fell from 7.8% during 1995–1999 to 6.9% during 2000–2005 and (6.93%) in 2006–2010. A substantial rise was observed from 2011 to 2015 by 14.5% followed by a 63.7% rise during 2016–2021. The trend of suicide due to illness has experienced a rise of 11.3% from 1995 to 1999 and 11.0% from 2000 to 2005 whereas from 2006 to 2010 the rate has risen to 12.2%, 14.8% from 2011 to 2015, and a significant rise of 50.4% was observed in 2016–2021. In terms of gender, it was shown that from the period 2014 to 2021, suicide due to family problem and academic failure is high among males, while suicide due to love affairs and illness is high among females.

We undertook the cumulative gender-wise difference analysis for the cause of suicide among children and adolescents to understand the differences. We have presented the findings in Table  2 . It was observed that there is a significant difference among males and females with respect to various causes of suicide.

Illness–as a major addressable cause of suicide among children and adolescents

In most cases of illnesses leading to suicide, children, and adolescents have been observed taking extreme steps due to unbearable worries without a visible solution and a lack of understanding of the very health conditions. Figure  6 shows that illness is a major cause of suicide among both male and female adolescents. The major illnesses causing suicide, as reported by NCRB, are AIDS/STD, cancer, paralysis, mental illness, and other chronic conditions. Among all the suicides reported due to illness, mental health, and other prolonged illnesses have been consistently high among both males and females as observed from 1995 to 2021 (Fig.  6 ). Out of the total death due to illness among children and adolescents, death due to mental illness was 7.74% in 1995–1999, but significantly increased after 2011, reaching 47.14% in 2016–2021 (male-59.34%; female-61.33%).

Year-wise reported suicide among children and adolescents based on Illness

Apart from illness, suicidal deaths due to poverty and unemployment were observable issues among adolescents. Over the period, adolescent suicidal deaths due to poverty (Additional File 1, Figure (A1 & A2) and unemployment (Additional File 1, Figure (B1 and B2)) have consistently evolved as major concerns.

Forecasting the future trends of children and adolescent suicide in india for the next 10 years.

We analyzed the time series data from 2014 to the last report available i.e. 2021 to see the future 10-year trend of suicide among children (< 18 years) through forecasting. We adopted the data from 2014 onwards because NCRB started reporting up to 18 years during 2014 and the later period (Fig. 2). We adopted the AREMA model for this time series analysis purpose. As per the finding from the ACF and PACF plots (Fig.  7 ), the following ARIMA models have been proposed to estimate additional model parameters: ARIMA (0,2,0), ARIMA (0,0,0), ARIMA (0,2,1), ARIMA (1,2,1), ARIMA (2,2,1), ARIMA (1,2,2), ARIMA (0,2,2). The ARIMA (0,2,1) model was found as the best appropriate ARIMA model for Indian children/adolescent suicide rate data because its LL (Log-Likelihood), AIC (Akaike Information Criterion), and BIC (Bayesian Information Criterion) values are the lowest among all suggested models Additional file 3). Additional File 4 shows estimated suicide rates for the next ten years (2022–2031). The graph presenting the forecasted trend of suicide rate for Indian children/adolescents is shown in Fig.  7 .

10 year forecasted trend of children and adolescent suicide in India.

This study explores the pattern, trends, and major risk factors of child and adolescent suicide in India along with forecasting for the next decade. Our study reveals a concerning rise in suicide rates among children and adolescents in India over the past 26 years and the estimate shows an increasing trend through the next decade (Fig.  7 ). The scenario is particularly concerning among the late adolescents where it shows a stiff rise among females as well as at the overall level (Fig.  3 ).

The study identifies the means of reported suicide among these populations in India, where hanging was observed as the most common method of suicide among children below 14 years, followed by suicide by consuming poison. These findings highlight the need for stricter regulations and enforcement measures to restrict access to these lethal means, especially among vulnerable populations. Here, it may be mentioned that adolescents from native and indigenous ethnic minority groups are at three times higher risk of suicide than the general population [ 21 ]. Globally, similar trends have also been observed in other countries [ 22 , 23 ]. WHO reported consuming poison as the main method of suicide in an estimated 20% of global suicide cases, most of which are from LMIC countries [ 24 ].

The present study reveals an important perspective on gender-wise suicide rates in India in the last 8 years (2014 onwards). While the worldwide suicide trend shows a higher number of suicides occurring among males, in India, this number among female adolescents surpassed males (Fig.  2 ). This sift is attributed to various causes of suicide, including academic failure, family problems, and illness, emphasizing the complex interplay of social, psychological, and environmental factors contributing to suicidal behavior among both males and females. Suicide due to illness, a major and mostly preventable risk caused a total of 1408 reported suicides in 2021 (NCRB, 2022). Among these illness-associated suicide completers, mental health was observed as a major reason for suicide. It was observed that suicide due to suffering from diseases is more common among females than that of males (Fig.  6 ) which may have its root in the gender disparity in access to healthcare [ 25 ] and well-being in Indian society. This similar pattern is also seen in other countries where cultural attitudes toward mental health contribute to gender differences in healthcare [ 26 , 27 , 28 ]. There is a persistent gender paradox globally that, females are more likely to have suicidal thoughts and attempts, while males have higher rates of completed suicide [ 28 , 29 ].

Similarly, In the context of prolonged illness, adolescents suffer from painful physical distress for a longer period of their lives and lose patience for living; in the absence of adequate resilience skills and social support, they desperately try to escape the pain, causing the adoption of suicide as a major option. Another reason is that due to prolonged illness, expensive medical care expenditures become unaffordable [ 31 , 32 ] and the financial burden increases the risk of these vulnerable groups slipping into extreme poverty [ 33 , 34 ].

Furthermore, in the context of the Child Labour (Prohibition and Regulation) Amendment Act 2016 defining the legal age for employment in non-hazardous occupations as 15 years [ 35 ], the NCRB report on poverty and unemployment-associated adolescent suicide deaths necessitates the timely and effective implementation of comprehensive social welfare policies and program. Niti Aayog, report 2021 further substantiates this need by indicating the fact that, 7% of India’s population is being pushed into poverty every year due to out-of-pocket expenditures [ 33 ], and raising the risks of poor mental health in the country. Similar observations have been reported in a systematic review from South Korea that highlighted low income, unemployment, and financial difficulties as the significant risk factors for suicide [ 36 ].

However, there have been several welfare programs initiated under different ministries in the last decade to increase the spending capacity of Indians by making healthcare more affordable for all. “Ayushman Bharat” is a similar umbrella health program at the national level by the Ministry of Health, Government of India while several other programs are available there initiated by various state governments. Though the public subsidy has improved in favor of the poor, it is also a fact that the inequality in the availability and accessibility of healthcare persists which is becoming a major risk factor in mental health care among children and youths in the marginalized section. Additionally, according to the National Mental Health Survey of India 2016, there is a large treatment gap associated with mental health in the country [ 34 ]. In the case of adolescents, the lack of proper knowledge and support about mental health creates ambiguity and hampers their scope of going for treatment in everyday life; impaired decision-making increases suicidal tendencies and suicides [ 36 ].

In the above context, the national mental health and suicide prevention programs need to explore such barriers and gaps in program implementation towards control and prevention of suicide. National Suicide Prevention Strategy, 2022 has been brought up, primarily aiming for a holistic address of the problem [ 34 ]. Developed countries like the United States of America, Canada, and several European countries follow strategies to minimize suicide among adolescents which include different active and passive strategies, such as providing general education about suicide, establishing crisis addressing centers and hotlines, promoting self-esteem and stress management, and developing well-support networks along with regular counseling [ 37 , 38 , 39 , 40 ]. Such experiences from other countries indicate that the interventions in India require realizing the emerging needs and adopting timely strategies. It is vital to emphasize that there are several major vulnerable communities and sections that are yet to be evaluated on their mental health care and support needs [ 41 ].

One major challenge in India is the lack of systematic reporting of mental health problems among children and adolescents. Similarly, there is a major lack of evidence around the risks and rate of suicide among children and adolescents in various settings. For example, a study in Arunachal Pradesh found that there were only two incidents of officially recorded suicide among the Idu Mismi community in a government report out of more than 250 cases collected through investigation during the same time [ 42 ]. We understand the low rate of official reporting of suicide has the reasons in follows: (1) it is a taboo/shame for the family to report suicide; (2) Many times, the attributed causes of suicide carry a significant stigma; (3) Suicide is often considered a deviant behavior from community customary perspective in several traditional societies and resolved through traditional councils rather than bringing to the formal system; (4) Suicide deaths/attempts, while reported in local hospitals, are required to be reported as medico-legal cases, which draws a lot of uneasiness. In this scenario, strengthening the reporting process of suicide in vulnerable populations will itself be an advocacy for the community [ 43 ].

Among younger children, suicide attempts are often impulsive. It might also be linked to hyperactivity, issues of lack of concentration as well as emotions like depression, confusion, anger, and stress [ 44 ]. Adolescents, on the other hand, face higher stigma and feelings of shame after a suicide attempt, which can drive them to repeated attempts [ 45 ]. The barriers to accessing mental health services burdened with various regressive cultural and religious beliefs and practices further lead to the rising trend of suicide among adolescents [ 46 ]. Bullying is another major public health issue in the context of mental health among adolescents, associated with serious negative outcomes such as depression, anxiety, delinquency, and suicidal thoughts [ 47 , 48 ]. In India, it has been a major problem in recent times [ 49 ].

Social and economic changes, such as rapid urbanization along with increasing inequality, can contribute to feelings of isolation and hopelessness among young people [ 50 ]. Changes in family structures, including higher rates of single-parent households and increased parental expectations, may also play a negative role [ 51 ]. Academic pressures, fuelled by the competitive nature of the education system, can lead to stress and anxiety, further exacerbating mental health issues [ 52 ]. Additionally, the persistent stigma surrounding mental health in India can prevent young people from seeking help [ 53 ]. Improving access to mental health services, particularly in rural areas where resources are scarce, is crucial for early intervention and prevention of suicide [ 34 ].

This study underscores the need for a comprehensive approach to addressing the complex factors contributing to the rise in suicide rates among children and adolescents in India. By exploring and understanding these factors, policymakers, healthcare professionals, and communities can develop targeted interventions and support systems to prevent suicide and promote mental health among young people.

Health programs and policies in India around mental health

The Mental Healthcare Bill 2016, which was passed in the Lok Sabha in March 2017 decriminalized suicide and provides mental healthcare and services for persons with mental illness [ 54 ]. In recent years, India has initiated and redefined a variety of health programs intended to improve mental health. The National Mental Health Policy (NMHP) of 2014, the Mental Healthcare Act of 2017, Rashtriya Kishore Swasthya Karyakram (RKSK) of 2014, School Health Program (Ayushman Bharat)– 2018, Sarva Shiksha Abhiyan (SSA)– 2011 and National Youth Policy (NYP)-2014, have all been implemented with efforts to enhance the mental health of the children and adolescents of the nation (Table  3 ). However, as the scenario indicates there is a long way to go to effectively address the obstacles around access and health-seeking behavior around mental health among the children and adolescents in the country [ 12 ]. Along with public health supports, social and cultural barriers are to be addressed to ensure the health services be utilized effectively. In the year 2019, India has recorded annual youth suicide rates as 80 per 100,000 in females and 34 per 100,000 in males (compared to 10.4 per 100,000 in the general Indian population) [ 55 ]. Though Sect. 309 of the Indian Penal Code (which defines suicide as a criminal act and a non-cognizable offense) has been removed, suicide-related news is still published along with crime news in various Indian newspapers [ 56 ]. Similarly, the retrospective data of NCRB India describes a consistent rise in suicide among children and youth in the country (Fig.  7 ).

Way forward

Addressing the rising rate of suicide among children and adolescents in India requires a comprehensive and multifaceted approach. A focused strategy on illness-related suicide is essential, involving healthcare providers, public helplines, psychologists, teachers, and parents practicing empathy and offering timely support to at-risk children and adolescents. Training in life skills, resilience, optimism, and social support should be integrated into daily routines to help individuals cope with stressors effectively [ 57 , 58 , 59 ]. Regular health screening, particularly in vulnerable and underprivileged populations, is crucial for the early detection and treatment of health issues that could lead to suicidal behavior. Free counseling services at school and community levels, along with strengthening tele-counseling facilities, including a crisis hotline should be readily accessible to all children and adolescents during their needs [ 60 ]. Ensuring gender equity in healthcare access is vital to address disparities and improve mental health outcomes for both males and females. Strengthening the Rashtriya Kishor Swasthya Karyakram (RKSK) like programs through regular evaluation can enhance their effectiveness towards mental health care. Additionally, targeted interventions to reach out to school dropouts are necessary to provide support and prevent associated mental health risks. Implementing strict anti-bullying policies and timely interventions can create a safer environment in schools and colleges. Actively incorporating life skill development activities like yoga and meditation into school curricula can promote resilience from an early age. Continuous evidence generation and third-party evaluations of government programs are essential for refining strategies and effectively addressing adolescent mental health issues.

This study gives an in-depth understanding of the historical and recent context of rising suicide rates among Indian children and adolescents over the last 26 years. The findings highlight the urgent need for targeted interventions to address the multifaceted factors contributing to this public health crisis. The prevalence of suicide among this vulnerable population is deeply concerning, especially considering India’s status as home to the largest adolescent population globally. The study highlights the need for strict regulations and enforcement measures to restrict access to lethal means of suicide, such as hanging and poisoning. It also emphasizes the importance of addressing the underlying causes, including academic pressure, family problems, relationship factors, mental health issues, poverty, unemployment, and mainly inadequate support systems which contribute to the growing trends of children/adolescent suicide in India. The study highlights the importance of a holistic approach to suicide prevention. Efforts should focus on raising awareness, decreasing stigma, timely planning, and developing early intervention programs. It was understood that a comprehensive approach is required at government agencies, healthcare providers, educational institutions, policymakers, educators, and the community level to create and implement effective suicide prevention strategies.

Strengths and limitations of the study

The strength of this study lies in its longitudinal analysis, which spans 26 years from 1995 to 2021, offering a comprehensive examination of trends in child and adolescent suicide rates in India. By utilizing the ARIMA (0,2,1) model, the study also forecasts the suicide rate for the next decade, providing valuable insights into potential future scenarios. This foresight can help policymakers and healthcare professionals prepare for potential challenges and allocate resources effectively. Similarly, by using negative binomial regression, we have been able to highlight the trends of suicide over the period.

However, the study also has limitations. The study relies on data from the National Crime Records Bureau (NCRB), which may have limitations in terms of accuracy and completeness. Additionally, the study focuses on children and adolescents, one from 1995 to 2013 and another from 2014 to 2021, as the NCRB’s age-wise reporting may be insufficient. The study does not explore regional variability in children and adolescent suicide rates within India, which could provide additional insights into the factors contributing to suicide. Furthermore, the lack of contextual evidence for the increase in suicide rates weakens the discussion of trends over time.

Despite these limitations, the study’s strengths, particularly its comprehensive analysis and forecasting, offer important information about suicide among children and adolescents in India.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

National crime records bure

World Health Organisation

Sustainable development goals

Accidental deaths and suicides in India

Auto-Regressive integrated moving average

Log-likelihood

Akaike information criterion

Bayesian information criterion

Crude suicide rate

Lower confidential interval

Upper confidential interval

Annual percentage changes

Average annual percentage changes

National mental health policy

National youth policy

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Acknowledgements

We would like to acknowledge that the manpower in the research grant received from the Indian Council of Medical Research (ICMR), New Delhi vide letter number Tribal/122/2020-ECD-II was utilized for the present study.

This research paper received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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ICMR-Regional Medical Research Centre, NALCO Nagar, Chandrasekharpur, Bhubaneswar, 751023, Odisha, India

Susangita Jena, Rachel Elizabeth Senapati & Subhendu Kumar Acharya

Department of Statistics, Utkal University, Bhubaneswar, Odisha, India

Prafulla Kumar Swain

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Contributions

S.K.A. conceptualized the study, contributed to the methodology, prepared the original draft, was involved in reviewing and editing the manuscript, and acquired the funds, S.J conducted the investigation, contributed to the methodology, and prepared the original draft of the manuscript. R.E.S conducted the investigation. P.K.S contributed to investigation, reviewing and editing of the manuscript.

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Correspondence to Subhendu Kumar Acharya .

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This research paper does not require ethical approval as it involves secondary data publicly available in the Government of India portal.

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Supplementary material

13034_2024_818_moesm1_esm.docx.

Supplementary Material 1. Year-wise reported suicide among children/adolescents based on poverty (A1 and A2) and unemployment (B1 and B2).

Supplementary Material 2. Population of children and adolescents by age and sex as of 1st March: (1996-2021) (in ‘000)

13034_2024_818_moesm3_esm.docx.

Supplementary Material 3. AICs, BIC, and AICc values for suggested ARIMA models for children/adolescent suicide rate in India.

13034_2024_818_MOESM4_ESM.docx

Supplementary Material 4. The forecasted value of children and adolescent suicide rate for the next 10 years based on the ARIMA (0,2,1) model with 80% and 95% confidence intervals.

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Jena, S., Swain, P.K., Senapati, R.E. et al. Trajectory of suicide among Indian children and adolescents: a pooled analysis of national data from 1995 to 2021. Child Adolesc Psychiatry Ment Health 18 , 123 (2024). https://doi.org/10.1186/s13034-024-00818-9

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Received : 25 March 2024

Accepted : 24 September 2024

Published : 30 September 2024

DOI : https://doi.org/10.1186/s13034-024-00818-9

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