HIV privacy laws are about choice and control, not shame

“You make it worse,” said my young friend. “By bringing lawsuits to enforce the HIV confidentiality laws, you make it seem like HIV is shameful and should be kept hidden.”

Though I am a strong proponent of “owning” one’s HIV status—and being open about it when circumstances allow—I couldn’t disagree more with my friend’s statement. And it’s not that I don’t recognize how having HIV-specific privacy and confidentiality protections—a form of HIV exceptionalism—may contribute to the stigma surrounding HIV. It’s just that I firmly believe the benefit of such laws and prosecutions greatly outweigh any incremental amount of harm that might accompany them. The solution, in my view, is to better understand and explain the history and purpose of these laws.

Let’s start with the history. In considering the “chicken or the egg” problem that sits at the root of my friend’s statement—do we have stigma because we engage in HIV exceptionalism or do we need to engage in HIV exceptionalism because HIV-related stigma is so severe?—it is important to remember that the stigma clearly came first. What we now know as HIV was stigmatized from the moment it was first identified as a phenomenon primarily among gay men, and the stigma only grew as other disproportionately impacted populations—like injection drug users and sex workers—were added to the list.

HIV-specific privacy and confidentiality laws were a natural reaction to the stigma that surrounded HIV from the very beginning. And these laws were not simply a legal solution to the obvious violation of medical privacy involved in the disclosure. Rather, they were a public health strategy designed to encourage people to get tested. Remember that even getting tested for HIV was considered a tacit admission that one was engaged in an activity that put them at risk for HIV.

When most people thought that you had to be gay or an injection drug user or a sex worker to have HIV, ensuring that people would feel comfortable getting tested was of paramount importance. Even though there were no effective treatments in the late 1980s and early 1990s, knowing one’s HIV status allowed people to mitigate the risk of passing it on to others. Hence, the HIV-specific privacy and confidentiality laws—with their strict protocols for disclosure and enhanced civil penalties for unauthorized disclosure—were a critical part of early efforts to combat the epidemic.

The natural question that follows is whether these laws are still necessary. After all, we’ve come so far in our understanding of HIV and the routes of its transmission—and we know that almost anyone from any walk of life can contract HIV. Not to mention the fact that there are effective treatments, as well as preventive medicines that serve as a quasi-vaccine. One could mount a plausible argument that HIV-specific privacy and confidentiality laws are a relic from a time when we had less understanding and compassion regarding HIV.

That would be a plausible argument but not a winning one. Unfortunately, HIV is still a highly stigmatized medical condition—currently the most stigmatized medical condition today and perhaps the most stigmatized condition of all time. Other conditions are much more deadly—cancer is one example—but there is a shame in the acquisition of HIV that does not exist at the same level for any other serious medical condition. And there are persistent myths about how—and how easily—HIV is transmitted that harken back to the earliest days of the pandemic. Stigma still discourages some people from getting tested, others from remaining in treatment, and still others from accessing the support they need to live successfully with HIV. Maintaining a strong disincentive to the unauthorized disclosure of what can still be highly stigmatizing information is as important as it ever was—both for people living with HIV and to keep potential disclosers in line.

With an ever-greater understanding of HIV and greatly reduced mortality for people living with HIV, it can be easy for those holding HIV-related private information to start thinking that strictly maintaining its confidentiality is not as important as it once was and to grow lax in their practices involving such information. But there is a disconnect between those important advances and the persistence of public misperceptions and ongoing stigma. Enforcement of HIV privacy and confidentiality laws serves as a bulwark against relaxing the standards for handling HIV-related confidential information and keeps the individuals living with HIV in control of when such information is disclosed.

Ultimately, that is what the HIV privacy and confidentiality laws are designed to do—allow the individual to make the choice as to when this information is shared. Some people will choose to share this sensitive personal information very rarely, while others may share it freely. But these laws are not about buying into shame around HIV or fostering the perception that this information should be kept hidden. They are about giving people living with HIV control over when and how their HIV status is shared.

I could not be more out about my HIV status—it is in my bio and appeared on my former employer’s website for years and years—but I still want to make the decision about where, when, and how it appears elsewhere. The HIV privacy and confidentiality laws are an attempt to give all of us living with HIV that important choice.

Scott Schoettes is an attorney and advocate who lives openly with HIV. He engages in impact litigation, public policy work, and education to protect, enhance, and advance the rights of everyone living with HIV.