Last September, in a move that has polarized activists and people living with HIV, the Centers for Disease Control (CDC) issued sweeping new recommendations to “normalize” HIV testing. The guidelines drop pretest counseling and written consent requirements—and urge that positive people’s names be reported to sexual partners and state health departments, just like the names of those diagnosed with syphilis or TB. The initiative, which many care providers say they will adopt in the coming year, explodes the idea of “AIDS exceptionalism.” The idea holds, basically, that of all the diseases blighting the earth, AIDS is by far the most stigmatizing. To protect those being tested for and diagnosed with AIDS against discrimination, the theory goes, special privacy protections are essential—even if these protections reinforce the very notion they combat. Namely, that people living with AIDS suffer in a world unto themselves, incomparable to those suffering from, say, cancer or leukemia.
Back when AIDS was almost exclusively associated with such “problem populations” as gay men and drug users—and when those infected with the disease invariably died, with very visible, telltale symptoms—the protections seemed warranted. But now that treatment breakthroughs have supposedly made living with AIDS “manageable” for many, does AIDS exceptionalism have any merit? If living a long life with AIDS is now possible, why overdramatize testing with needless obstacles—especially when an estimated 250,000 positive Americans don’t know their status? By making testing as routine as a blood pressure screening, the CDC argues, these people can quickly get on with their manageable lives.
The debate is hardly new, but 2007 will be a landmark year in its resolution. Those who consider pretest AIDS counseling needless will point out that women who get breast cancer screenings, which routinely deliver grave diagnoses, usually receive no counseling first. Those who oppose names-based reporting to health officials, meanwhile, will note that every American state has some form of a criminal statute to prosecute HIV positive people who engage in some form of sex—even, in some cases, when the sex is consensual and the positive person discloses. Could such reporting accelerate these prosecutions? Why isn’t transmitting hepatitis or HPV also criminalized?
When asked to elaborate on the guidelines, CDC spokesman Timothy Mastro, MD, simply told POZ, “By normalizing testing, we will be destigmatizing HIV testing.” Is that where the destigmatizing ends—abruptly, after the testing? Indeed, we wonder whether the relentless disease comparison that the new recommendations have spurred doesn’t hide a less ambiguous issue.
Assuming that all the cases the widespread testing identifies will be guaranteed care—a big assumption— might it also be fair to ask whether we have any guidelines for post-test stigma? Could one agree that normalized testing is a public-health imperative while still wondering about the social welcome the newly diagnosed will receive? Who decided, for instance, that the many current fear-based AIDS prevention campaigns don’t make people living with HIV feel abnormal? What about the statistically bogus myth of the “down low”? Or the everyday fear that calling in sick from med side effects will put you on the fast track for demotion?
Noted New York City HIV doctor Lloyd Bailey says, “By making HIV an exception, we are saying that it is worse than other diseases.” But is that truly the contest we need to be winning?