One of the big issues at Lumumba clinic is disclosure. Disclosure here refers to a person informing others of their HIV positive status. It’s deeply intertwined in the philosophy of FACES as a whole and  with what they call “positive living”. As best as I can describe it “positive living” is the idea that by reducing self stigma (or shame as we would call it), disclosing one’s status to others, and keeping oneself healthy (eating well, using condoms etc) is the best way to ensure that you will continue to adhere to your antiretroviral therapy (or ART).

When I first heard about the ideas of positive living and disclosure after attending some of the patient education sessions, I’ll admit I was a little skeptical. I’m all for letting sexual contacts know your status – but neighbors? Co-workers? That runs against the deeply ingrained ideals of privacy we hold so dear in Western medicine. As for “positive living”, I thought, well there’s nothing wrong with eating well and feeling better about oneself but could that really improve taking your pills? In the US we think of adherence is being primarily about individual’s  commitment to taking a drug, not predicated on these other issues.

I’ll admit after the last two and half weeks of clinic – I’m coming around to the FACES disclosure bandwagon.  After listening to stories and interviewing patients I began to see how inextricably intertwined issues of disclosure and adherence were. I met a seven-year old girl who was congenitally infected with HIV. As disclosure to children is not done until the age of 10 usually, this child wasn’t privy to why she was taking medications. Her mother, who was also HIV positive, was in charge of dosing the medications. But her mother works, every day. So the child spends lots of time with their neighbor, including time when she is supposed to be taking her HIV drugs. We saw the child because she was failing her medication regimen, meaning her immune system was breaking down. Her mother, after much questioning, revealed that her daughter hadn’t been taking her medications at the neighbor’s house because the neighbor wasn’t aware of the child’s status. Now to us this reticence to disclose the child’s HIV status likely seems understandable. What business is it of the neighbor to know this child’s private health information? Part of me agrees but as I am learning, it ends up being very important indeed. In fact it ends up being the reason this child had to be switched to the second line HIV drugs. That means that barring the Kenyan Ministry of Health striking a deal for 3rd line drugs, this child has no safety net, no next step if these drugs don’t work out.

I also met a man who was HIV positive and worked for a security firm, one of the many be-uniformed guards that stand outside of the nice houses in town. He was at clinic in the middle of the day on a weekday. He was wearing his uniform and proudly told us that his boss and co-workers knew his HIV status. He said he told them because he didn’t want to hide it. He wanted them to understand why he had to go to clinic on a weekday and to understand that he was taking his health seriously. I was pretty shocked that he had disclosed to his work, but also pretty impressed with his openness and refusal to be ashamed about his predicament.  I realized how easy it would be for him to skip clinic on busy work days if his boss and co-workers didn’t know his status.

In Helen Epstein’s book The Invisible Cure she discusses how the tragedy of HIV in Africa is magnified by the export of US stigma based around the disease. Because we view it as  a “gay” illness and the product of promiscuous sex we have exported our view of the illness to Africans despite the fact that the demographics and transmission here are deeply different.  I think about that sometimes when I hear about disclosure at the Lumumba clinic.  By departing from Western ideals about privacy and encouraging disclosure perhaps people here are finally combating the stigma and shame that coats this illness unlike any other.

Published in: on May 17, 2011 at 9:57 pm  Comments (1)  

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  1. What an interesting observation. I think there is something to the idea. unfortunately our country is so Puritanical. Many people probably think they know no one that is HIV positive. Same goes for not “knowing” any gay people. So coming out whether you are gay or HIV positive, may encourage more sympathetic and constructive attitudes. I can lead to tolerance and better care for the patients.

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