Tuesday, April 6, 2010
A couple of weeks ago I was taken to see a woman in a rural area who was very sick. She was terribly emaciated and the place she lived in had clearly not been looked after for a long time. The woman insisted that she did not have HIV, although she also claimed not to have been tested. After a few days, she was taken to the local health centre. There, it turned out that she had already been tested for HIV, was found to be HIV positive and was put on antiretroviral drugs (ARV). But she refused to take the drugs and agreed to be sent home, as the health centre was unable to do anything for her. She died about one week later.
All we could do was insist that she went to the health centre to be tested and take her drugs. She reluctantly went to the health centre but refused to take her drugs. It was as if that was all that was left to her to preserve her dignity. For some time, she had refused the advice of neighbours and health volunteers. And they were growing less willing to visit her, because they knew that she was going to die. On the day she went to the health centre, she looked humiliated and perhaps even angry.
The stigma that still attaches to HIV/Aids, and even TB because of its association with HIV, may seem like a sticking point that results in people wishing to deny that they have been infected, even when the cause of their illness is undeniable. But the stigma is real. People are ostracized and treated differently because they have a disease that is associated with illicit sexual activity, either on the part of the sick person or on the part of someone with whom they are intimately connected.
The 'behavioural paradigm' for explaining HIV transmission is widely adhered to and informs most HIV prevention programmes. From the extremely naive ABC (Abstinence, Be faithful, use a Condom) to the downright foolish mass male circumcision (MMC) campaigns, the assumption is that because HIV is mostly transmitted by sexual intercourse, all we need to do is get people to change their sexual behaviour.
So far, I have accepted the often published claim that most HIV is sexually transmitted. But I have argued that the circumstances in which people live and work, for example, may determine who they have sex with, when and under what conditions. Trying to influence their sexual behaviour without examining these circumstances too, will result in a lot of failed prevention programmes. Most prevention programmes to date have, indeed, failed.
But perhaps, while rejecting the behavioural paradigm, I have fallen into the trap of accepting something like a sexual paradigm, that most HIV transmission is sexual transmission. Perhaps this is not even true. I was aware that there were people arguing that non-sexual, particularly medical transmission, could be far higher than accepted by many theorists. But I had to exclude certain lines of enquiry in order to limit my dissertation to a manageable field. Now that I am no longer so constrained, I have time to revise this limitation.
If medical transmission of HIV is significantly more common than supposed by most HIV analyses, a lot of questions could be answered. For example, perhaps more women than men, especially women of childbearing age, are infected because they receive more medical treatment. Perhaps many children who have been infected, especially those whose mother is not infected, have been infected by medical treatment. Perhaps the reason those in Northern Kenya, who have least access to modern medicine, also have very low levels of HIV because they are not being infected by medical procedures.
I have been reading a book by Daivd Gisselquist called Points to Consider: Response to HIV/AIDS in Africa, Asia and the Caribbean, conveniently published on the internet. Some of the things revealed in this book are truly shocking. When I have finished, I have to go through everything I have written about HIV and reconsider my whole view of it. My view of development will probably remain the same, but the way I reached some of my conclusions will have to be revised, considerably.
If Gisselquist and others are right, and I have no reason to believe they are are wrong, the woman who refused to take her medication could have been a victim of stigma, not primarily emanating from her own neighbours, but from some of the most eminent health professionals in the world. That HIV is primarily sexually transmitted in African countries is a long held, received view. Because of this received view, people who say they have not had sex in the period in which they became infected have not been believed. Women who are infected when their husbands are not are assumed to have had extramarital sex. Where couples are infected with different strains of HIV, they are both assumed to have been promiscuous, rather than just one of them.
This received view is in need of thorough testing and it is incredible that it has been used to face down challenges for so long. The view has shaped most of the (highly unsuccessful) prevention campaigns, but also people's reaction to their being infected with HIV or the reaction of others when faced with someone who has been infected. How many innocent people may have died in shame, misery and isolation because the health profession has refused, for whatever reason, to investigate its poorly supported assumptions about frequency of transmission of HIV in medical contexts?