AIDS Project Director's Update
Inventing "AIDS Exceptionalism"
Today's public health fundamentalists charge that "AIDS exceptionalism" coddles people with HIV while threatening overall public health. These critics insist that sound public health policy dictates using mandatory testing and names reporting to stem the spread of HIV, which they claim curbed syphilis decades ago.
But "AIDS exceptionalism," as they perceive it, is a fiction. To begin with, the suggested measures actually were used rarely against syphilis (doctors frequently neglected to report the names of those in their care with sexually transmitted diseases). Notably, the public health fundamentalists who want mandatory HIV testing and names reporting are not proposing a package deal that includes the entire range of "traditional" interventions. For example, syphilis was treated, rendered noninfectious and generally cured. There certainly is no offer, after identifying those affected by HIV, to provide them with unqualified access to treatment (to the extent effective treatment exists) -- nor is there any real guarantee that people identified with HIV could not legally be forced out of jobs and services.
The federal Centers for Disease Control and Prevention has indicated that it intends to recommend names reporting of HIV infection in an attempt to get a more accurate picture of the status of the epidemic, and to better target prevention efforts. The danger of this proposal is exposed by the current obsession with "exceptionalism" and a new wave of HIV backlash. Remember last fall's hysteria fed by media accounts of Nushawn Williams, the troubled 20 year old accused of infecting a number of young women in upstate New York's Chautauqua County? That case reveals that many politicians (and talk show hosts) envision names reporting as a tool for a radical twist on "tradition": use of names reporting to publicize, even arrest, those with HIV as part of an ill-conceived strategy that is more retribution than prevention.
AIDS has been exceptional in a number of ways. Other victims of plagues past certainly experienced political indifference and discrimination, but AIDS is the first disease to have 27 laws criminalizing it, making acts from spitting to sex a felony in various states for someone who has tested positive for HIV. Criminal sanctions apply only after a person bothers to get tested, so, ironically, the best way to avoid liability is to avoid knowing anything about your HIV status, regardless of how you behave. AIDS, also, to this day, is the only disease, other than mental health illness, routinely targeted by insurance companies for limits on benefits not applied to any other catastrophic illness.
The latest cry of "exceptionalism" attacks health care and services provided by AIDS service organizations. Ignoring the huge numbers of volunteers who make many services for people with HIV possible, this focus obscures the true problem: the need for reform of health care financing, so that everyone with a serious, chronic illness has access to decent medical care and services.
One of the positive "exceptional" things about AIDS is the extent to which a community came together to address the disaster of health care and indifference for people with HIV, to advocate for needed resources, and to pull together a huge network of volunteers and services to care for the sick and their loved ones. This is not a scandal; it is an achievement and a model for other disabilities groups who, for better or for worse, also continue to advocate narrowly for the discrete members of their groups. Segregated services for people with HIV are a mixed blessing -- they fill a vacuum, but reflect the nature of funding streams as much as programmatic philosophy.
"AIDS exceptionalism" mislabels complex, national problems. We can harp on this fashionable figment and villainize the sick, or we can do the real work of addressing the need for real HIV prevention education and for health care financing reform.
Catherine Hanssens is AIDS Project Director, Lambda Legal Defense and Education Fund.
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