Rights Language and HIV Treatment: Universal Care or Population Control?

Abstract

Over the past three decades, the World Health Organization has negotiated a global consensus among activists, governments, and the pharmaceutical industry with regard to the human rights of persons with AIDS, and those at highest risk of contracting HIV. More recently, epidemiologic modelers have proposed a “treatment as prevention” in which strategies like safe sex and harm reduction are considered unnecessary because mass HIV testing and aggressive maintenance of individual with HIV are believed sufficient to drive down population level viral load, thereby decreasing the individual odds of encounter a person with infectious HIV. This article considers the historical evolution of the human rights approach to HIV, and analyzes the loss in rights and dignity that may accrue from a shift toward a population-level approach to prevention.

Notes

¹The Canadian Centre for Excellence in HIV/AIDS, located in Vancouver, BC, is one of the several research groups that created the computer models used to argue for the economic and prevention value of the treatment-as-prevention approach. In order to test their model, the Centre for Excellence influenced the Provincial government to shift the existing constellation of HIV services into a program called “Seek and Treat for Optimal Prevention of HIV/AIDS.” Several policy changes apparently related to S and T occurred as the program hit the ground: (1) deletion of the law that assured confidentiality for those with a contagious disease, (2) directions to doctors to offer HIV testing to any sexually active person, and without the pre-test and post-test counselling required for more than a decade under the BC Centres for Disease control policies, and (3) widespread use of a newly licensed “instant” test for HIV. The test, which in some sites is offered anonymously, has a high false positive rate (1–7% of positives are incorrect), requiring those who test positive to retest through conventional—and now no longer confidential—channels. It is not clear whether those who test negative receive any post-test counseling, a missed opportunity from the standpoint of education and prevention (BC Centre for Excellence in HIV/AIDS FORECAST; About Seek and Treat; Stop HIV/AIDS).

²In an alternate version of the modeling article, authors ignore the many reasons persons avoid medical surveillance. Instead of assessing the impact of colonialism, homophobia, and drug policy—issues widely explored in the social science work on AIDS since the mid-1980s—researchers paint the dispossessed as irrational:

… there are tremendous challenges associated with this initiative [Seek and Treat], given that a substantial number of individuals eligible for treatment will come from the pool of those marginalized and not engaged in care. The HAART expansion based on the 2008 IAS-USA guidelines will therefore require the development of a sustained and intensified strategy to identify HIV infected individuals and those at risk, helping them to stabilize their lives and facilitate their sustained engagement in appropriate health care and support, all of this within a voluntary and fully consented framework. These individuals are usually suffering from mental illnesses, addiction and poverty, thus complicating their access to proper health care, as it is the case of a large number of Aboriginal peoples and injection drug users. (Hogg, Lima, and Montaner 2010)

³In Canada, you may not be evicted from your residence because you are a member of any number of “minority” groups; however, you have no underlying enforceable right to housing; that is, the government cannot be compelled to make good on its signature to decades of international proclamations that concern the right to housing.

⁴According to Foucault, the notion of the “public” emerges in the eighteenth century as a dimension of the new concept of population, at once biological, as in the shift from humankind to human species, and political; public is “population seen under the aspect of its opinions, ways of doing things, forms of behavior, customs, fears, prejudices, and requirements” (75). The biological dimension of population—and the word—has been absorbed by demography and epidemiology, while law and politics absorbed the “public.” Twentieth-century human rights activism has also privileged the latter, attempting to reincorporate the biological aspect of human being in reproductive and health rights. The incomplete re-suturing of these two aspects of population enables policymakers to argue that population health programs are good for all individuals within a population, so good, that the individual rights persons might wish claim are more limited, and therefore, lesser rights.

⁵This “initial period of AIDS activism” began in approximately 1981, with the recognition of a new, as-yet unnamed syndrome and stretched through 1984, when a virus was identified and linked as the prime, but not sufficient cause of the syndrome. As AIDS emerged in other regions of the world, the local histories of gender, sexuality, health, and development activism intertwined with the new question of AIDS. These important local, national, and regional histories shaped AIDS activism on the global scale, reverberating creative and hybrid responses. However, only the responses that most closely resembled the imaginings of “local activism” were publicized in publications and conferences, and eventually articulated by WHO as “best practices” to be taken up directly by national or local groups.

⁶Lyotard opens Le Differend:

1. You are informed that human beings endowed with language were placed in a situation such that none of them is now able to tell about it. Most of them disappeared then, and the survivors rarely speak about it. When they do speak about it, their testimony bears only upon a minute part of this situation. How can you know that the situation itself existed? That it is not the fruit of your informant's imagination? Either the situation did not exist as such. Or else it did exist, in which case your informant's testimony is false, either because he or she should have disappeared, or else because he or she should remain silent, or else because, if he or she does speak, he or she can bear witness only to the particular experience he had, it remaining to be established whether this experience was a component of the situation in question. (3)

⁷HIV antibody tests, and by the late 1990s, viral load tests, are unfathomably lucrative as the epidemic stretches out in space and time. If mass testing becomes the norm there will be a huge market, with many repeat customers: positive people will stop testing, but negatives keep coming back for more.

⁸Once a drug has been approved, it can—and often is—used informally to treat something that is not on its “label,” hence the term “off label usage.” For example, aspirin is given as “heart attack prevention.” The ability to identify and then apply for patent extensions for secondary uses increases a company's market share. HIV Post-exposure prophalaxis (PEP) is currently used (in some places) off-label for women who had been raped, occasionally for gay men who report having a safe sex accident, and, by 2010, was being researched to give to people who are not infected, but were judged likely to become so (Grant and Lama).

⁹“Herd immunity” exists when enough individuals are vaccinated against a disease that the unvaccinated have lower odds of becoming infected simply because there is less chance of encountering an infected person. Public health officials aim for a vaccination rate that most effectively reduces population wide transmission: the exact dynamics of this process are the basis for developing vaccination campaign strategies.

Additional information

Notes on contributors

Cindy Patton

Cindy Patton is Canada Research Chair in Community, Culture and Health and Professor of Sociology and Anthropology at Simon Fraser University, Canada, Health Research and Methods Training Facility, Suite 3150, Simon Fraser University-Vancouver Campus, 515 W Hastings St., Vancouver, BC, Canada, V5A1S6.