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India, HIV, and Stigma Marsala

ASU Global Health students help kids in Chennai practice their English

Chennai (Madras) in Southern India has long been a hot spot for HIV, but rates of new infection there (as in elsewhere in India) have thankfully been going down. Public education and associated outreach like prenatal care seems key to much of that reduction in the last decade. Yet, currently more than 2 million Indians are living with HIV. And many of those infected and otherwise affected* by HIV are children.

Over a decade ago, when I first moved to ASU, I was working on the design of what is now our School’s largest degree program – Global Health. I was looking for suitable partners to provide students with the types of practical experiences and skills that would best challenge and teach. I met with two (then young) students – Sanjay and Eric – working to build their own modest NGO in southeastern India. Their goal: increasing public knowledge about HIV, in particular how to prevent exposure in the lowest income parts of Chennai.

Zoom forward a decade. This month, I had the thrill of being able to visit the 14 ASU undergraduates who were working for this summer with their resulting not-for-profit. IAPA, the International Alliance for the Prevention of AIDS, now has four staff in India, and leads a variety of health interventions.  Things like teaching classes on HIV prevention at schools, and helping partner NGOs push for condom use in the LGBTQ community.

ASU Global Health students help prepare food parcels for families, Chennai July 2017

IAPA also provides support – medical, nutritional, and emotional – for 40 HIV-infected  children – through the Arokiay Children Nutrition Project. We had the delight of spending the day with them. The kids and their families supported by this program certainly feel stigmatized by their HIV. They are cautious about having photos taken in case their neighbors learn about their status (hence no pics of faces here except of our amazing ASU student interns who greatly enjoyed time with the team). HIV remains socially maligned and feared in India — as it does in many parts of the globe. Criminalization in India of  sex work and same-sex sexual relationships adds to the feelings of risk and rejection that HIV triggers.

These wonderful Arokiay kids are not, however, feeling stigmatized solely by their HIV. They come from the lowest castes. They are poor: one twelve year old we met had just dropped out of school to work full-time as a mechanic’s assistant. They are also, relatedly, visibly chronically malnourished. One 17 year old boy is a little over 3 feet tall.**  Adding to their stigma burden, their mothers are HIV positive, and often their fathers are not in the picture… And, if their parents die – as is a real risk –  they are then orphaned as well. The side-effects of both the disease and retrovirals they are taking can also produce other potentially stigmatized side-effects, such as the blindness that had taken hold of of one of the kids in the program.

I have been thinking a lot about what it means to live with these types of intersecting stigmas. Does the stigma-effect top out with HIV? Or, much worse, are the stigmas compounding? Does having another stigma or three above HIV make everything so much worse? In fact, there are few good empirical studies on this point.

There is one longitudinal study done with Henan, Chinese HIV-affected children, with parents who died from or currently infected with HIV.  It suggests this is precisely what may be happening. The Henan case is an unusual (and really dreadful) one because the parents became HIV-infected after selling their blood in a poorly managed state scheme in order to support their struggling families. Their families were so poor, that for many of the orphaned children they found the material shape of their lives has improved for those who ended up in government institutions. These kids are socially stained by their parent’s disease and death in multiple ways: their parents had/have HIV, their parents sold blood (itself seen as a sign of really desperate poverty), and many have been rejected by remaining relatives. After they were followed for three years, a portrait of a vicious cycle emerged. Children who felt more mistreated because of their status as HIV-orphans – were more depressed, and more likely to perceive stigma around their HIV. Those more depressed were more likely to perceive their neglect and rejection by others. The intersecting stigmas thus seemed to lock them into a cycle of worsening emotion and illness over time.

Stigmas rarely occur in isolation, as the India and China examples of child HIV show. To date, though, most of the academic work on stigma focuses on analyzing the miseries of single stigma. HIV. TB. Being orphaned. Being food insecure. We need to start thinking about how to understand and tackle not just single stigmas, but the common and dreadful stigma marsala. This requires a reorientation of how we do research on stigma —  but for these kids in Chennai and Hunan it seems to be what is really needed.***

* Children can be HIV-infected and/or HIV-affected. HIV-affected includes things like being orphaned by the disease even if HIV-negative.

** IAPA works hard to help supplement the families with fortnightly supplies of millet, beans, and other staples.

***  If you would like to support the delightful, loving children of Chennai we met on our recent visit, you can read more about IAPAs work and donate here. You can also attend the annual fund-raising dinner in Arizona, and volunteer.

 

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Alex Brewis