Thursday, August 21, 2008

When AIDS activists get ugly

According to Wikipedia, "activism can be described as intentional action to bring about social or political change. This action is in support of, or opposition to, one side of an often controversial argument." In the global struggle against HIV/AIDS, activists have contributed positively in an number of ways, particularly in securing greater access to antiretroviral drugs for resource-poor countries and increased funding for HIV-related research and programs.

AIDS activists share common aims, but recent developments make it clear that there are profound disagreements within the activist community on methods and convictions. In the Autumn issue of the Southern African Journal of HIV Medicine (summary available here), AIDS activists Nathan Greffen and Gregg Gonsalves take dead aim at the words and actions of the well-known French AIDS activist organization ACT UP-Paris. According to Geffen and Gonsalves, ACT-UP Paris over the past years has displayed a pattern of irrational behavior, very publicly accusing researchers and research institutions of unethical behavior with little or no factual basis for their claims. One example they give is ACT-UP Paris' spectacular trashing of the Gilead exhibit at the 2004 International AIDS conference in Bangkok, which was supposed to protest trials of pre-exposure prophylaxis with the drug tenofovir among sex workers in Cambodia. Gilead, the pharmaceutical company that produces tenofovir, were not even involved in the study. Months later, ACT-UP Paris were instrumental in shutting down a tenofovir trial in Cameroon, mostly by whipping up a broth of accusation, innuendo and rumor. Much smoke, little fire: no one as of yet has been able to spell out what exactly was so ethically egregious about the Cameroon study.

Geffen and Gonsalves give a number of other examples, but they all make the same point: ACT-UP Paris has been pointing fingers at HIV/AIDS clinical trials and particular approaches to HIV prevention (such as circumcision) on ideological rather than factual grounds. But what is worse are the consequences of 'irrational activism': obstructing serious debate on important ethical issues in HIV/AIDS science, and possibly undermining important avenues of research in the struggle against a deadly global epidemic.

ACT-UP Paris has not been slow to respond to the article on its website. Unfortunately, as a rebuttal, it seems to be all over the map. They understand Geffen and Gonsalves to be accusing them of being rabidly 'anti-science', and spend much time declaring how much they like science, how much they are in the company of scientists and how capable they are of reading scientific protocols. In regard to their 'mediatic' actions (such as tossing symbolically red jam at the exhibits of pharmaceutical companies), they defend their tactics of bringing ". . . to the public arena the problems of research and reverse power relations that are most often not in the favor of persons living with HIV/AIDS." At a certain point, their response to the accusation of irrational activism looks, well, irrational:

Doing treatment activism also means raising political issues. What is anti-scientific about that? Do you want us to think that science is ideologically pure and that researchers don't have to [sic] society and those who they work for?

Readers are advised to have a look at the article and the webpage -- as well as whatever reliable supporting documents they can get their hands on -- and come to their own conclusions as to whether this heated debate is a sign of health or sickness within the AIDS activist community.

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