How do I write this? A friend suggested I begin by imagining that OraQuick, the first at-home HIV test from OraSure Technologies, had been introduced in the early-1980s, when the disease was first emerging. The world today would be a very different place: countless lives would been saved through early detection, and HIV-positive people may have been more accepted, rather than being stigmatized and treated with fear and loathing.
“Anything that can move us away from HIV exceptionalism can over time reduce the stigma,” Peter Staley, a veteran activist and member of Act Up, told me. And what could be less exceptional than a testing for HIV the way most women test for pregnancy—at home, using a simple color-coded procedure?
And yet, my initial reaction to news that the FDA had finally, after six years, green-lit an over-the-counter version of OraSure, an oral swab test used in doctor’s offices since 2002 was one of skepticism. “This is really going to screw up the CDC’s tracking program,” I thought as my mind somersaulted to a more macabre anxiety: a positive reading without immediate counseling is a potentially disastrous combination, leading perhaps to a spike in suicides.
Many of those people I spoke with for this piece had similar fears, but Staley was not among them. “The good that comes from liberalization of testing outweigh the rare anecdotal evidence stories to the contrary,” he said. “The AIDS community has a history of over-emphasizing the possible downsides prior to every single liberalization we have tried with regard to AIDS testing,” he said. Neither is Staley convinced about the value of immediate post-diagnosis counseling. “Almost every person I talk to who got news in counseling doesn’t remember a damn thing about what was said.”
Janet Weinberg, Chief Operating Officer at the Gay Men’s Health Council, initially shared my own knee-jerk misgivings about OraSure, particularly the lack of counseling and immediate follow-up. She came to conclude, however, that there will always be people who skip post-detection treatment, psychological or otherwise. Besides, anyone who’s testing at home has probably thought the situation through. “I suspect that anyone testing at home is sort of prepared a little bit for the fact that they may be testing and they may need to be seeing a doctor,” she said. (Those who want to see a doctor after using OraSure can call the 1-800-number on the side of the box. Staffers on the other end then direct callers to medical or counseling services in their zip code)
One drawback is likely to be the price, which at $40 could be prohibitive for at-risk low-income communities. “Many of those who are at the greatest risk of stigma and least likely to be comfortable getting tested at a clinic or providing their name are exactly those least able to afford this test,” said Sean Strub, founder of POZ magazine. James Loduca from the San Francisco AIDS Foundation agreed, to an extent. “At its price point, it won't be right for everyone, but for people who fear going to the doctor, for example, it's going to be a useful option,” he said. “And for people who may not be able to afford the home test, resources like hivtest.org can help them locate a nearby free testing site."
Doug Michels, president of OraSure, makes clear his product isn’t meant to be a “replacement” for in-office testing. It’s just another tool. And it’s a tool that has no small cultural significance—as a product used by “consumers” not “patients,” and sold in mainstream stores such as Walgreens and CVS that, as Michels points out, would not have come near a product like OraSure in the 1980s. In that sense, OraSure is not simply part of the fight against HIV and AIDS, it’s part of the fight against the stigma around HIV and AIDS. And if you defeat the stigma, you have a much better chance of defeating the cause.