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Stigma

One of India’s great HIV clinicians, Suniti Solomon, passed away last week. The New Yorker published a remembrance article about her, recounting how she diagnosed the country’s first HIV cases, opened India’s first voluntary HIV testing and counseling center in 1993 and was integral in helping people receive care and treatment. This article also told a powerful story about a patient she has once cared for who committed suicide, in a pact with his mother, after family members learned of his status.

I had not known of Dr. Solomon previous to this trip, however this article stood out to me. Partially because I am currently in India and frequently discussing the status of HIV here, but mostly because it echoed an issue that remains a problem in India more than 20 years later: the stigmatization of HIV. During our time here we have heard a lot about this stigma- its effects on patients being able to find providers willing to care for them, the robustness of their social networks and supportive family members, and their sense of self worth, among other things.

Hearing of Dr. Solomon’s work was also very timely with our visit to Snehakiran clinic, a rural based NGO that provides outpatient and limited inpatient care to individuals with HIV. We had the opportunity to spend a half-day at Snehakiran, observing clinic visits between its extremely dedicated HIV physician and his patients, some of which had travelled great distances to be seen. (With no advertisement or formal referral system patients continue to show up at the doorstep from far and wide, presumably through word of mouth.) While medications and any current symptoms were discussed at each visit, a prominent theme was patients’ difficult social situations and how this affected their disease. Weaved throughout these stories was the effect of stigma.

One patient told of how her brother, and only involved family member, was being pressured by his social circle to kick her out of the house. Another patient, a young boy, had lost both of his parents to HIV and lived in an orphanage where he needed to hide his status for fear of being ostracized or kicked out. There was concern over him using community things such as towels with his compromised immune system, however also fear of making him stick out to his peers if he was given a separate set of items. This fear likely also decreased his willingness to be compliant with a cumbersome medication regimen (if a boy of 10 can even keep track of 11 daily pills). Later that day, during one of our frequent van/travel discussions, we also learned from Dr. Gopal that children with HIV are not infrequently kicked out of schools if parents of the other, healthy students find out. You can imagine how an environment such as this not only makes it near impossible for many individuals with HIV to live happy, healthy lives, but also, on many levels, serves as a driver of new infections.

The state government in India has an ART (anti-retroviral therapy) program that is reportedly free to all individuals with HIV, however with large number of patients waiting to be seen each day by a few physicians it seems to somewhat necessarily become not much more than a medication dispensary. This leaves a large gap in available medical care for HIV positive individuals, especially for those who are also poor, and especially with the pervasive stigma limiting the number of providers willing to care for them. In turn, this makes people like Dr. Solomon and places like Snehakiran clinic all the more essential while the social environment of India hopefully moves towards acceptance.

This entry was posted in BMC.

One comment on “Stigma

  1. Aravind Menon says:

    There has been a huge campaign to help remove the stigma but a lot still needs to be done. The physicians and NGOs, specially the ones involved in LGBT rights have played a pivotal role in connecting patients to care. Cultural change sadly, is slow, but it is reassuring that the emerging generations are more literate and aware of the needs of our patients.

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