UNJUST

America’s Creepy HIV+ Registry

All 50 states have what’s, disturbingly, called ‘HIV surveillance’—a name-based registry of HIV positive residents.

12.01.15 6:00 AM ET

Despite the fact that President Obama has not proposed—and if he’s as politically savvy as he seems to be, never will propose—a federal gun registry, the NRA and pro-gun extremists continue to fear-monger about this mythical possibility. And yet, did you know the federal government and every single state has a name registry of those who have tested positive for HIV/AIDS? Where’s the outrage against this?

Dec. 1 is World AIDS Day. Despite the fact that prevention efforts have reportedly reduced the incidence of HIV by more than two-thirds since the height of the epidemic, about 50,000 new cases of HIV are still diagnosed every year in the United States—and an estimated 1 in 8 Americans don’t know they’re infected. 

According to the Kaiser Family Foundation, once upon a time rates of HIV testing were on the rise—between 1997 and 2004. But since then, testing rates haven’t improved much. Could it be a factor that, during the same period, more and more states started implementing mandatory name-based reporting for those who test positive for HIV?

As of 1997, only 27 states had implemented name reporting for HIV testing—though those states represented only 24 percent of AIDS cases, since “high incidence” states did not adopt name reporting early on in the face of opposition from community groups including ACT-UP and the ACLU

But today, every state has implemented name-based reporting and the federal government monitors that reporting in what is literally, unabashedly called “HIV surveillance.” I realize this is a common term of art within the infectious disease field—see, e.g., tuberculosis, for which there is also mandatory name reporting and which is also subject to federal “surveillance”—but within a context of an infection that is historically stigmatized and still subject to significant under-testing and diagnosis, the practice and terminology is downright horrifying. 

In fact, research has shown that the existence of name-based reporting laws discourages people from getting tested for HIV. According to research cited by the ACLU, “One study found that over 60 percent of individuals tested anonymously would not have tested if their names were reported to public health officials.” While other research has contested this conclusion, shouldn’t public health policy err on the side of caution—as well as protecting privacy?

I had no idea mandatory name reporting for HIV testing was even a thing until I stumbled on it. And it intuitively strikes me as a horrid idea, not to mention an outrageous violation of privacy rights. But I had to check that I wasn’t the only one feeling this way.

Turns out, in 1999 as names-based reporting legislation was gaining steam, more than 60 of the nation’s leading AIDS and civil rights organizations announced the opposition to the policy. Groups from the National Minority AIDS Council, to the San Francisco Department of Public Health AIDS Office, to Gay Men’s Health Crisis, to the Illinois Federation for Human Rights warned that names reporting “engenders fear that discourages testing and creates more barriers to health care.” 

Moreover, advocates noted, it was counter-productive at the least to collect the names of those infected without providing meaningful health care treatment options to those individuals affected—many of whom lack health insurance.

Yet a lot of the opposition I found was from over a decade ago. Had positions changed? No. 

“We have long opposed mandatory name report for HIV testing,” Ronda Goldfein, executive director of the AIDS Law Project of Pennsylvania, told me. “The passage of time has not changed our opinion. Reporting to the government the name of anyone who has had an HIV test is not a good prevention strategy.” That didn’t stop Pennsylvania from joining other states to adopt and implement a name reporting policy.

It’s worth noting here that according to one source I spoke with, though home testing and a few other options may offer complete anonymity, in effect all HIV testing in the United States is now names-based and the issue is politically moot here. In fact, the practice is now being exported to the rest of the globe.

As the globe marks World AIDS Day, and we reflect on an epidemic that is still a crisis here in the United States and worldwide, maybe we should rethink a policy that takes those who voluntarily step forward to be tested for HIV—a practice we want to encourage—and reports their names to the government if they test positive. 

As a nation, we’re constantly being asked to sacrifice our privacy for security and weighing that balance. In this case, name-based reporting seems largely unnecessarily and entirely unjust.