Wednesday, June 6, 2012
It may be tempting to believe that if everyone were to undergo a HIV test, this would make it easier to control the disease. And it could be a good start, there is a lot to be said for universal testing. But as Alvar Mwakyusa writes in Tanzania's Daily News, there are some important matters to be discussed first. The idea that people should be compelled to be tested for certain diseases is highly questionable. Should patient autonomy be suspended? Or would it only be for HIV, or for other designated diseases, and which ones? And would this only be in countries where HIV prevalence is high, or everywhere?
Apparently, some would go further than compulsory HIV testing and insist that people also be compelled to disclose their status. To everyone? Just their HIV status? Perhaps they would also be compelled to disclose how they were infected, whether it was sexual or non-sexual, by a casual partner or a monogamous partner, by a tattoo artist or by a medical doctor, etc. I'm not arguing that there is a slippery slope from disclosing status to disclosing a lot of other highly sensitive personal information about yourself and probably others; I'm suggesting that, in the current climate, revealing your HIV status could be construed as implying a lot about your lifestyle, morals, associates and more.
After all, most HIV infections in Western countries are said to occur as a result of either male to male sex or intravenous drug use. The former is frowned upon in many countries (and in many more families, communities, social groups, etc) and the latter is illegal in most countries, perhaps in every country. In many developing countries and most African countries, the received view is that HIV is almost always transmitted heterosexually, with the added implication that some kind of illicit sexual behavior was involved, such as extra-marital sex or transactional sex. Declaring that you are HIV positive is never just revealing a discrete piece of information about yourself. And what will be implied about you and those associated with you can often only be guessed at.
Why should we believe that HIV testing would even be voluntary? Some believe it should be universal but that people should not be compelled. Mass male circumcision programs are supposed to be voluntary, but some have claimed that there is a lot more than 'awareness raising' when it comes to recruiting people to undergo the operation. Most seem to be very badly informed, perhaps even deliberately misinformed, or at least only given partial information. Some men and women believe they are 'protected' from HIV and don't need to use a condom.
What protection do people have against the prejudice that they will almost certainly be subjected to once they have declared their status? Will they even be eligible for treatment? Many HIV positive people, even some who have reached an advanced stage of the disease, do not receive the drugs they need to keep them alive. Others receive them intermittently. And many on treatment are finding that they need a lot more than just drugs, but are unlikely to receive anything else. Even if the status of everyone was known, would that guarantee that their lives would be improved, that they would thereby gain access to things that have been denied them up to now?
Already, people who may face the highest risks from prejudice and discrimination because of their HIV status, or their perceived HIV status, are often more likely to be tested without being given much option about whether to test or not; their confidentiality may not be guaranteed either. These groups include pregnant women, sex workers and others. It seems to be assumed sometimes that the person who tested positive first infected others, but this may not be so. Just because a pregnant woman tests positive does not mean she infected her partner. And if her partner turns out not to be infected, which seems to happen a lot, this does not mean she has had other sexual partners.
The problem is that HIV is not always heterosexually transmitted, despite assurances that it almost always is in Africa (but nowhere else). When I talk about the 'current climate' above, this is what I am referring to. It is often assumed that HIV positive people in African countries are either promiscuous or in some other way involved in illicit sex. It's not enough to educate people about testing, it is also necessary for UNAIDS, WHO, CDC and other institutions to come clean about the relative contributions of sexually and non-sexually transmitted HIV.
The discussion about testing in Tanzania makes several references to the HIV and AIDS Prevention and Control Act of 2008, according to which intentional transmission of HIV is an imprisonable offence, carrying a sentence of between five and ten years. But if counselling and testing often can't establish how someone became infected, who may have infected them, who they may have infected, etc, how can such a law even be tenable?
James Krellenstein and Sean Strub have written an article entitled 'The ethical implications of “treatment as prevention” in the United States' that looks at the situation in a wealthy country, where many of the above considerations may be of less relevance. But the article shows that there are a lot of issues still to be discussed, that the matter is by no means clear.
Someone in the Tanzanian article asks if the country even has the resources to test everyone, whatever about the other issues. But something not raised is how often people would have to be tested. Would it be every year, more, less? People's status can change in the space of a few months, especially in places where transmission rates are high. It seems unlikely that Tanzania would have the resources to test all 40 million people once, or even all adults, let alone do so regularly. Will any of the outstanding issues be adequately discussed? The list above is by no means exhaustive. Or will zealous donors turn up with the money and get going before the main issues have been addressed, as they have done with mass male circumcision and other programs?
Since the 1980s, fingers have been pointed at various groups, certain practices have been said to be more likely to transmit HIV, old prejudices have been stoked up and new ones formed. But in several countries it has become clear that a sizable proportion of people becoming infected with HIV could not be considered to be at high risk of being infected. And some who do face high risk of sexual transmission also face non-sexual risks. For example, sex workers, who are unlikely to be infected sexually in Western countries, clearly face obviously sexual risks in African countries. But they also face non-sexual risks, which are also obvious if you are open to the possibility of non-sexual transmission.
The proposal to test everyone for HIV, and even the proposal to put all HIV positive people on antiretrovirals, are not the first instances of ethical standards being lowered. Aggressively 'marketing' birth control that may not be safe and circumcision programs that are neither safe, necessary nor effective are just a couple of earlier examples. Refusing to countenance the idea that a large proportion of HIV transmission is non-sexual may not be unethical but failing to use data that raises questions about the received view, on which most HIV policy is based, surely is.
If expanded HIV testing was being used as an opportunity to trace infections to find out where they are coming from and to prevent more infections, the more people tested, the better. This would not justify compelling people to be tested, but if they could do so without fear of repercussions, it would be a big step forward in reducing HIV transmission. But treating HIV differently from all other health issues is one of the reasons why people who are HIV positive are subjected to so much prejudice. The principles of medical ethics can not be compromised on the grounds that HIV is an emergency. On the contrary, it is because of the urgency that those principles remain vital.
[For more about non-sexual HIV transmission and injectable Depo Provera, see the Don't Get Stuck With HIV site.]