Why is monitoring and evaluation of HIV intervention campaigns so difficult in India?

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HIV prevention campaigns in India have been an amalgamation of efforts from government bodies, civil societies and non-governmental organizations, who for the last 3 decades have been fighting the infection on the ground and have been instrumental in providing healthcare services to those fighting the infection. Before we talk about why it is difficult to monitor how prevention campaigns work on the ground, it is important to understand the current situation of the epidemic in India and who this disease affects the most.

India ranks third globally in HIV burden and has a concentrated HIV epidemic. However, the country is only able to identify 79% of the estimated people living with HIV and initiate treatment for 83% of those who need the treatment in the country. (1) In addition to the prevention campaigns, those affected by AIDS are not able to avail proper treatment i.e Antiretroviral Therapy at clinics due to a variety of issues such as overcrowding, infrastructural gaps, lack of proper training and even awareness.

The Government of India established the National Aids Control Organization in 1992 to address some of these problems and it has been determined that Targeted interventions (2) are the most resource-effective way to implement HIV prevention and care programmes within low-level and concentrated epidemics in India which targets certain high-risk populations with their programmes.

Who are the high-risk populations in the context of HIV/AIDS?

Behaviours that put people at greater risk of HIV infection include high rates of unprotected sexual partnerships, unprotected anal sex with multiple partners, and injecting drugs with multi-user equipment and drug preparations. Thus, population groups where these behaviors are concentrated include:

Female Sex Workers (FSW)
Men who have Sex with Men (MSM)
Hijra/Transgender community (TG)
Intravenous Drug Users (IDU)
Bridge populations (Migrants & Long-Distance Truckers)
Since these make a broad part of the society who are often looked down upon and their behaviors are stigmatized, identifying the infected individuals and the need of intervention within this population becomes a huge challenge.

Challenges related to the identification of high-risk populations

It is extremely important to have definitions agreed upon as to who makes up a part of a certain population. For example, an IDU could be a person who has injected drugs for a period of time versus someone who regularly injects drugs.

Similarly, agreeing upon certain definitions of who makes up the Transgender community and understanding the social hierarchies are then very important. Running campaigns and making them inclusive involves not only governmental and non-governmental organizations but communities as well which force people to come to terms with their biases and move forward effectively. In such contexts, public health campaigns can turn into law-enforcement responses depending on the level of stigma experienced by the community. An example to be taken here could be the sex workers of Kamathipura (3) where sex workers and their families were evicted on the HIV/AIDS stigma despite numerous campaigns by the government. Where the government fell short was including the brothel owners and their networks into confidence who often work in a tight-knit community.

While NACO with the support of organizations such as SAATHII, which also happens to be my host organization, has tried to address some of these problems through providing choices and options of easy accessibility, availability and acceptability, the commodities (only male lubricated latex condoms) are supplied through peers, outreach workers and social marketing. For IDUs there is a provision of needles, syringes and OST drugs through free distribution.

But the problem arises when hidden populations cannot be identified due to a lack of sensitivity and gender education given to the care providers on the ground. This leads to a gap between populations that are identifiable and the ‘hidden population’ which unknowingly get overlooked.

There might be a more collaborative way to do this

I came across an interesting case study (4) that actually used participatory and mixed-method evaluation tools to evaluate the prevention campaign. In 2005, an independent team evaluated the HIV prevention campaign for MSMs in Bangladesh conducted by the Bandhu Social Welfare Society (BSWS). The team not only investigated the activities done but also the quality of services as well.

They collected data through a review of monitoring data like the number of peer education contacts, in-depth individual and group interviews with programme staff and beneficiaries, and observation of programme services. The independent ACTion consulting team also used a participatory approach, by involving BSWS staff and beneficiaries in designing the evaluation, collecting the data and planning action on the basis of these inputs. As a result of involving both staff and beneficiaries in the different stages of the evaluation, the evaluation team gained better access to respondents and better quality data. As the participants had a say in deciding what was evaluated, the evaluation results were actually effective and were used by programme stakeholders. There was a transfer of skills where staff learned more about how to plan their own campaigns better which eventually led to exceptional results.

Such methods can be used in smaller doses across India to bridge the gap that currently exists in stigmatized public health campaigns and effectively address culturally sensitive issues with care and success.

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1 “UNAIDS DATA 2021.” UNAIDS, 2021, pp. 188–89, www.unaids.org/sites/default/files/media_asset/JC3032_AIDS_Data_book_2021_En.pdf.

2 Mohammed, Suresh Kunhi, Ronald Upenyu Mutasa, and Ishira Mehta. “Targeted Interventions.” (2021). https://openknowledge.worldbank.org/handle/10986/35375

3 Seshu, Meena Saraswathi. “Sex Workers Of Kamathipura: Nowhere To Go, Nowhere To Live.” Https://Www.Outlookindia.Com/, 4 Mar. 2022, www.outlookindia.com/magazine/national/sex-workers-of-gangubai-kamathipura-nowhere-to-go-nowhere-to-live-magazine-184855

4 Gray, Ronald H. “Methodologies for Evaluating HIV Prevention Intervention (Populations and Epidemiologic Settings).” Current Opinion in HIV and AIDS, vol. 4, no. 4, 2009, pp. 274–78. Crossref, doi:10.1097/coh.0b013e32832c2553.

Aishani Jaiswal is a New Delhi based research analyst. Having graduated from the University of Delhi with a degree in Political Science, her areas of interests lie in Gender, Minority Rights and Public Health. She has previously worked in research and media spaces focusing on South Asian issues and tackling online hate speech. In addition to her professional goals, she is also passionate about mental health issues. She is extremely fond of dogs and spends a considerable amount of time with them.