Thursday, September 2, 2010
As a result of the historical association between HIV and sexual behavior, especially sexual behavior considered to be unsafe, illicit, immoral, or whatever, HIV testing is unusual among medical tests by being 'opt-in'. People need to request that they be tested or agree to be tested, in theory, anyhow. Michael April discusses the merits of the WHO's recommendation that HIV testing become 'opt-out' rather than 'opt-in', with reference to the greater availability of HIV treatment.
April wishes to argue for opt-out [apologies, earlier I wrote 'opt-in' in error] testing on ethical grounds, in terms of the themes of consequentialism, liberalism and libertarian paternalism. In deference to his expertise in these themes, I shall not comment on them. This is partly because I'm a very deferential person but, more importantly, because they are quite irrelevant to the issue of whether HIV testing should be opt-in or opt-out. (Although I would point out that, despite the precepts of liberalism and libertarianism, epidemics are factors of whole populations of people, people interacting with other people; they are not factors of individuals.)
First, I take issue with April's claim that "Treatment provision is currently the most important benefit of HIV testing." Treatment provision is important, but it is no more important than establishing, not just whether someone is HIV positive or HIV negative, but finding out how infected people became infected. Treatment is not, and April accepts this in his paper, the same as prevention. But HIV would be exceptional in yet another way if preventing further infection was not also a primary aim of HIV testing.
In order to find out how HIV is spreading, we need to go beyond the highly prejudiced assumption that HIV is mainly transmitted through heterosexual sex in African countries. We need to document people's medical histories in a way that helps us to identify the contribution of non-sexual HIV transmission. Once we have done this, we can best advise people on how to avoid infection if they are HIV negative and how to avoid transmitting the virus if they are HIV positive. Testing aims to screen the whole population, not just those who are HIV positive.
The current practice is to follow UNAIDS advice that HIV is almost always sexually transmitted in African countries (though not in other countries, even in contexts where 'unsafe' sex is very widely practiced). 'Counselling' involves all manner of verbal contortion in the attempt to explain to HIV positive people that they had some kind of unsafe sex, whether they ever remember doing so or not. People who have not had any kind of sex or any kind of sex that could be considered unsafe may be puzzled, but their pleas are generally ignored. They are African and everyone in the HIV industry knows what African sexuality is like, don't they?
April surmises that treatment should be an important consideration for someone weighing up the respective consequences of not getting tested or getting tested. They could risk becoming very sick and eventually dying, also transmitting the virus to others, on the one hand. And they could face the almost inevitable stigma if found to be HIV positive on the other hand. Is the promise of being treated, and therefore less likely to become sick and die relatively soon and less likely to transmit the virus to others enough to assuage people's worries about facing HIV related stigma?
You could argue that, given the availability of treatment, people should reasonably be expected to be tested and, if found HIV positive, face the stigma. The benefits could be seen to outweigh the potential stigma. Or you could argue that the stigma would be unbearable and that, under such conditions, a person would be better off to take their chances and possibly suffer terribly and die prematurely from AIDS.
But people should be able to decide whether they want to be tested without the fear of being stigmatized if found to be HIV positive. There should be no fear of being stigmatized, such that a person might refuse to be tested and even treated, and go through the rest of their remaining years suffering as a result of their decision, and possibly not even managing to avoid stigma in the end. And I'm not just saying 'stigma is bad, we shouldn't stigmatize', as UNAIDS and the HIV industry tend to do (though stigma is bad and we shouldn't stigmatize).
I mentioned above the 'historical' association between HIV and sexual behavior, not because HIV is never sexually transmitted. Sometimes it is. But we should have moved on from the knee-jerk reactions of journalists and other commentators in concluding that because HIV is sometimes sexually transmitted, anyone who is infected almost definitely engaged in some kind of unsafe sex. Not only have journalists and other commentators not moved on; a whole UN agency was built around a virus that is known to be transmitted sexually and non-sexually, and it hasn't moved on, either.
Ok, that's a bit inaccurate. UNAIDS does realize that HIV can be transmitted non-sexually and they realize that it can be transmitted non-sexually in African countries. They just don't tell people in Africa. They warn their own employees to avoid medical facilities in African countries but they deny that medical transmission of HIV plays a significant part in the worst HIV epidemics in the world. Most African countries have inadequate medical facilities, unbelievably low numbers of skilled personnel, shortages of equipment and drugs. If medical transmission of a blood-borne pathogen hardly every occurs in African countries, where does it occur? Let’s, at least, investigate.
So, Mr April, if HIV is seen as a disease of whole populations, one that can be prevented as well as treated, testing can benefit everyone. If it is seen as a virus that can be transmitted both sexually and non-sexually, that might help reduce the stigma that has been driven by the HIV industry itself. But more than that needs to happen. The HIV industry, and especially UNAIDS, need to re-examine their adherence to the behavioral paradigm, which says that preventing HIV (in African countries) is just a matter of influencing sexual behavior.
Evidence against the behavioral paradigm is plentiful, certainly too plentiful to rehearse in a brief blog post. But it should be clear now how the 'dilemma' Mr April would 'solve' through ethics has a far more pragmatic solution (or ‘dissolution’). It's not certain that we can ever undo the stigma that UNAIDS and the HIV industry have spread. That will certainly take a lot of work. But we need to start by reforming and, if necessary, dismantling the institutions that are the source of this stigma.
We need to gather evidence of how HIV is being transmitted in order to mount a viable prevention campaign. We should no longer resort to the mathematical models that pander to the industry, the innuendo that panders to the press and the pseudo-morality that panders to politicians. If there is a possibility that medical, cosmetic or any other facilities could be sources of HIV transmission, that needs to be investigated. It's not good enough to carry out investigations in wealthy countries, it's poor countries that have the facilities that are most likely to be transmitting HIV.
HIV is not just a matter of individual responsibility, as it's been painted. In relation to viruses like HIV, people are not mere individuals. It is their interactions with others, many and various interactions, that give rise to epidemic spread. Reuse of unsterile medical and cosmetic equipment provides the perfect conditions for transmission of HIV and other blood-borne viruses. It’s only the prurient association of HIV and illicit sex that allows such a dogmatic and irrelevant notion of individuality to arise in the first place.
Spread of HIV will not be prevented through individual behavior change alone when it was not individual behavior alone that resulted in the virus becoming endemic. But sexual behavior is, par excellence, group behavior. This is not to say that people shouldn't receive sex education and take precautions against infection with all diseases and against unplanned pregnancy. But nor can you accuse every HIV positive person of being promiscuous or careless. Sex, in itself, is not wrong, not even for Africans. There’s no ethical dilemma. But there is a pragmatic problem of how to undo the damage we have done by stigmatizing HIV to the extent that many people would risk suffering and dying rather than be tested and treated accordingly.
If there is any dilemma, it is this: how can the very people who established the extremely racist orthodox view of HIV now replace that view with one that is more appropriate? Personally, I don’t think the same people can take everything back. Why should anyone believe them? So, does the HIV industry hold on to its rather tattered credibility and keep on lying to cover up previous lies? Or does it at least create the possibility of reducing the transmission of HIV and perhaps eventually eradicating the disease? But when you put it that way, there is no real dilemma, is there?