Workshop on ethical and social science implications of HIV cure research

Now here is a piece of shameless promotion. I am currently co-Principal Investigator (along with Dr. Joseph Tucker) of a NIH-funded research grant exploring the ethical and social implications of research currently taking place on a cure for HIV. As part of this project, our working group -- with generous support from the Brocher Foundation and the UNC Center for AIDS Research -- are holding a workshop next week on this topic at Brocher's swanky conference center on the shores of Lake Geneva. Roughing it, I know. We will even have a Tweetmeister (or whatever they are called), sending real time bird-like signals about the goings-on in the workshop out into the Tweetosphere. The tweets will show up at @HIVCureWorkGrp, and workshop highlights will flutter over to our website at: http://searchiv.web.unc.edu.

I think -- and why wouldn't I? -- that the workshop topic is intrinsically interesting on many different fronts. Clinical cases which have been given strange Hollywood-sounding names (the Mississippi Baby, the Berlin Patient, and the Visconti Cohort) have indicated that we might be able to control HIV longer and more comprehensively than current antiretroviral treatment does. Maybe even cure it, whatever that means. What sort of ethical challenges would research in view of a HIV cure involve? What happens, socially, when a disease of this magnitude and global reach changes its status from incurable to treatable to maybe curable? What will this do, for better or for worse, to ongoing HIV treatment and prevention efforts? Is there something to be learned from other diseases in which a similar transformation occurred? What questions of justice will be raised by early introduction of potential HIV cures, given the problems of access to HIV treatment faced for decades by HIV-positive persons in developing countries? How does the new biomedical research on HIV cure relate to the many cures  that have been claimed around the world, on a regular basis, since the beginning of the epidemic?

HIV cure of the month

Over the last two decades, there has been two tracks on HIV cures: the scientific track, which has not been very successful, and the ethno-religious track, claiming a long series of successes, none of which  have been substantiated. Africa is a leading producer of faith-based and herbal remedy HIV cures. The BBC reports this week that faith healers in England -- apparently of African origin -- have been claiming to make HIV-positive persons test HIV-negative through prayer. One of the groups involved is the Synagogue Church of All Nations (SCION) in Nigeria, whose website includes YouTube videos of believers being healed of various diseases and conditions through the miraculous workings of faith healers. In England, these sorts of groups are accused of telling HIV-positive persons to stop taking their antiretroviral therapy; three deaths were attributed to these practices of Evangelical Christian groups last year.

The relationship between ethno-religious cures and Africa is an curious one. Africa is the origin of HIV,  and though it is not rational, there is some sense of shame there, that this should not be seen as an 'African product'. I remember people in the DR Congo claiming that HIV could not have come from their country: it must have been snuck in from Rwanda or Cameroon. There is also a persistent rumor in Africa that HIV came totally from the outside, from the leading powers of the world, as a diabolical plot to depopulate the African continent. In this context, the idea of an indigenous, non-scientific African cure for HIV becomes very tempting, a delicious thought. After all the high-tech, heavily funded biomedical struggles of powerful and affluent nations to find a cure, the answer comes from something local, homespun, either natural in the form of herbal concoctions, or supernatural in the form of African religiosity. If that was the case, it would be an incredible coup.

Unfortunately, that is not the way it is. In the English case, it looks much more like religious quacks taking advantage of and endangering the well-being of HIV-positive persons, as well as those with other illnesses. British health authorities are unwilling to comment on the matter for fear of alienating religious sensibilities. But they should. Religious organizations, just like secular ones, should come under the scrutiny of the law if their practices seriously threaten the health of its adherents.