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The Rhetoric of Inaction

June 2002

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

For light summer fare this June, I'm reading "A Problem from Hell: America and the Age of Genocide," by Samantha Power. The book reviews the United States' response to genocide, from the slaughter of Armenians at the beginning of the 20th century to the raw and recent tragedies in Bosnia and Rwanda. I won't make a facile comparisons of the Holocaust to the AIDS epidemic, but some of the ways in which the U.S. avoided intervention in those cases bears striking resemblance to the way our country has handled the epidemic, at home and abroad.

Power mentions "the rhetoric of reaction," a taxonomy proposed by social scientist Albert O. Hirshman, which identifies three key "excuses" for avoiding progressive policymaking: "Futility -- the claim that all attempts at social engineering are powerless to alter the natural order of things; perversity -- the argument that interventions will actually backfire and have the opposite of their intended effect; and jeopardy -- the idea that a new, possibly more radical reform will threaten older, hard won liberal reforms."

Futility, perversity, jeopardy. Three powerful alibis. I spend too much of my time in meetings or on conference calls with policymakers and colleagues who continually invoke these three arguments:

  • Futility: A senior NIH official recently told me that investigation into the long-term risks and benefits of antiretroviral therapy (ART) aren't feasible. That studies on side effects or on the best time to use, switch or stop therapy can't be done because they are too difficult to do -- and furthermore, industry and academic researchers have little interest in doing them, the former, for lack of commercial incentives, the latter, because of the scant likelihood of academic advancement based on such research.

  • Perversity: A virologist recently buttonholed me to warn that deploying ART in the developing world will backfire and spread HIV drug resistance across the globe.

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  • Jeopardy: A fellow AIDS activist cautioned me against targeting high AIDS drug prices in the U.S. He's worried that challenging Big Pharma's profits in their most lucrative market will kill the goose that lays the golden egg by shaking their resolve to develop new drugs. He urges me to be satisfied to confine my activism to reducing prices in the developing world.

It's hard to constantly run up against these excuses and not get angry. Yes, long-term clinical effectiveness studies are hard to do. Yes, there's little commercial or academic incentive. Yes, ART will breed drug resistance. Yes, drug companies may invest less in research if profits dip significantly. But it isn't enough to simply get angry, just as it isn't enough to advocate and not address these concerns.

If there is no commercial or academic incentive to do long-term studies, then the public sector, the NIH, can fill this gap. If the NIH is not set up to do this type of research by virtue of the "natural order" of U.S. academic medicine, then maybe some language in the next NIH re-authorization bill can spur a change in the system. If it's not obvious that this kind of operational and public health research is a public responsibility then perhaps it needs to be explicitly mandated.

If ART breeds drug resistance -- which indeed it does -- then perhaps programs to promote "treatment preparedness" that discuss adherence and the risks and benefits of therapy need to be established to educate people with AIDS before the drugs become available.

If drug companies threaten to invest less in research, then perhaps legislation should be passed to ban direct-to-consumer advertising, which is a far bigger resource drain than R&D expenses.

After two decades of AIDS, much of the easy work of activism has been done (as if any of it was ever easy), and the most difficult dilemmas remain. We have to confront the charges of futility, perversity and jeopardy that our activism engenders and address these issues head-on.

One hundred million people may be infected with HIV by 2007. Perhaps some comparisons are less facile than most, and as Justice Edwin Cameron said at GMHC last June: "the language of 'holocaust' and 'genocide' is not inapposite. The moral issues are unambiguously clear, and the imperative to action is unequivocal."

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.
 
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