On June 9 and 10 this year, Francesca held a consultation with members of the INP+ networks for developing a customized advocacy tool kit. One of the essential contents of the tool kit would be case studies of how the networks in varying levels used advocacy as a strategy to improve lives of people living with HIV (PLHIV).
The PLHIVs present in the consultation who are also the leaders of their networks, related stories after stories of the problems many of them confront. One that struck me was the story about two different people from two different states about their HIV tests. And when I said tests, I meant tests for each.
One network officer from Delhi, Hari, narrated the story of Murali (not the real name). Murali has a “concordant family”. In health sector parlance it means he and his wife have HIV, their child has the virus too, apparently transmitted at birth. One day, he got very sick from what seemingly was an opportunistic infection (OI). He went to a hospital to be treated, but before that he was first tested for HIV. A surprising revelation, the test said he was negative of HIV.
Due to dearth of details, I am making up this paragraph. Assuming Murali belongs to the lower economic stratum of the society - a safe assumption because statistics say majority of the PLHIVs is from low income groups – him being sick but HIV negative would not be able to avail of treatments reserved for people with HIV, unless maybe he has a Below Poverty Line (BPL) card that would allow him to avail of government schemes reserved for BPL card holders. But he was found not to have HIV, so that’s still good news. I can imagine his relief. But wouldn’t you now wonder how the wife and the child had become positive?
Anyway, Hari went on to say that Murali had another test in a different testing center after a few months. There he was found positive again. If I were in his wife’s place, I would be relieved; at least any doubts cast upon me when he tested negative would be erased. But would Murali be happy too? Probably not. So after some window period elapsed he went yet again for another test, and the result showed…. make a guess.. no traces of HIV was found in his body. Hari said, “so far he is negative”.
In Tamil Nadu, Sarovanan (not the real name again) tested positive with HIV. Like many of us Sarovanan wanted to get second opinion, or third, or fourth when ill. Second test showed Sarovanan negative, third showed him positive, the fourth said negative. Given the odds if he took a fifth test it would show he is positive. But if he wants to even the score would go for another round and may end up negative. Sarovanan has probably had enough blood extracted from his veins because of these tests that he just decided to approach a person with HIV and asked, “Am I positive or not?” But as Indians are wont to say in helpless situation, and the guy Sarovanan approached did, “what to do? I am not a doctor.”
I wouldn’t blame Murali and Sarovanan if their moods would start to swing extremely back and forth from depression to jubilation. In a country where discrimination (still) exists on the basis of caste and with an HIV stigma to complicate the matter I wouldn’t be surprised if their mood swings develop into bipolar disorder. Fortunately, they still haven’t lost their wits.
It’s alarming enough to know that the number of cases of HIV in India is still uncertain. According to reports half of this has already been identified, but about 15% of the identified cases may be duplication, because many Indians go for several tests in different testing centers under different names. (According to a National AIDS Control Organization (NACO) representative who gave a presentation during VSOI’s HIV workshop in Faridabad in December 2009 when asked about possible duplication of data). It is also alarming that the people who took guts to get tested could test positive and negative alternately. Murali and Sarovanan are just two cases, what is it when a government has to worry about 2.3 million people estimated to have HIV? It may not be enough to cast even an iota of doubt on the reliability of testing centers, but wouldn’t you want to pause and wonder how this could happen?
I took HIV test twice in the Philippines. During the first time in 2005, I agonized while waiting for the test result. (don’t ask why if you want this one short, just read). I was told then of the procedure, that if at first analysis it would show that my anti-bodies were reactive to HIV they would do another test to confirm the result. The second test result would be final. Back then test results could not be known till two weeks later. Well, I tested negative and everyone who knew congratulated me as if I won a lottery. Anyway, that’s how the test is done, as far as I know. The second time I had an HIV test was in 2009 to fulfill requirement for visa application to India. I was 100% sure that the result would be negative. If it showed otherwise I was prepared to demand another. But while waiting for the result I thought of possible reasons how the result could be otherwise. I thought wildly about my dentist’s syringe and my surgeon’s scalpel, though I was confident I could not possibly contract HIV with sterilized medical and dental tools.
My point is, taking an HIV test alone could be tormenting, even more when done repeatedly and getting different result each time. It takes gumption to do it. This is HIV we are talking about, not only could it be a fatal virus, albeit not instant, this could also be a psychologically and socially debilitating virus that could alter the course of one’s life. Without proper and adequate support someone with HIV can be killed faster by humiliation, remorse, guilt, grief, social exclusion, discrimination. Times of India reported in late July that HIV stigma and discrimination still persists in India.
I also heard stories about quack doctors prescribing meds to PLHIV, but that’s a different story. As I said, Murali and Sarovanan’s may only be two isolated cases, but isn’t it worth checking by NACO? This made me ask if the government of India regulates HIV testing. This deserves attention if those working on HIV issues could gather ample evidences that this is happening in a larger extent. The estimated HIV population in India is overwhelming and by now I am no longer surprised. True, there is so much more issues the government, thru NACO, are concerned with as regards to HIV. But I believe a lot could change, even policies could change, if the first step to knowing the prevalence of HIV is addressed. It is one thing to provide crores of rupees for care and support of identified PLHIVs, it is another to ensure the reliability of procedure for identification.
The effort to prevent further spread of HIV starts by encouraging people with high risks to get tested, NACO should guarantee that testing centers are legitimate and dependable.
