The message continues to be difficult

It has been a rough couple of years. In the fourth decade of the HIV epidemic, another deadly and much more easily transmitted disease came along to put the whole world into quarantine—making it more difficult for people living with HIV to access care and for people at higher risk to access prevention and testing. Then just when things were getting back to some semblance of normal, the very same communities at the highest risk for HIV were hit with MPX, an extremely painful and temporarily disfiguring disease most often transmitted through sexual contact.

One commonality between these three epidemics is the stigma that arises for those who acquire a virus or acknowledge they may be at higher risk. Public health experts have long agreed that stigma drives the HIV epidemic by making it harder to get people to test for HIV, to consistently engage in care, and to use certain prevention tools, like condoms or PrEP. From the beginning, AIDS was associated with gay men, injection drug users, sex workers and Haitians—all marginalized groups. In the eyes of many, the first three of these groups engaged in activities that made this modern-day plague appropriate “punishment” or consequences for their conduct.  

Even as the epidemic grew in other populations, it never really lost its identity as a disease of the marginalized. For many, people with HIV had engaged in morally objectionable activities or had sexual contact with people who engaged in those activities. Either way, many considered people living with HIV not just responsible but blameworthy for their medical condition; the label of “innocent victim” was reserved for those who acquired HIV neonatally or through blood transfusion.

Our culture has come a long way since then, but we still have a long way to go. By the time I tested positive in 1999, the blaming and shaming was not quite so pointed, but I distinctly remember people asking, “How could someone so smart be so dumb as to acquire HIV?” This question, with its implicit assumption that “all” one needed to do is wear a condom, was pretty devastating to my fragile post-diagnosis self-esteem. I finally pushed back with one straight female friend by asking if she had used a condom every time she had sex in the previous 10 years; she sheepishly backed off.

We did a version of this type of blame game in the early days of COVID. Because it was easily transmitted, not through sex (or worse yet—anal sex!) but simply through the air, COVID was never going to carry the kind of stigma that HIV does. But once people were aware of the seriousness of COVID and were being encouraged to take precautions to prevent it, there was a sense of failure—and perhaps some judgment—if one got COVID in 2020.

At least that is how I felt when I came down with it in July 2020. Not only did it seem like proper precautions should have prevented acquisition (“how could someone so smart be so dumb?”), but I also felt I had let the team down and was perpetuating the epidemic. Even though I’d been doing this work for many years—and took all the appropriate steps to ensure I did not pass COVID to anyone else—I still managed to internalize that bit of blame and the stigma that comes with it.

Perhaps some amount of stigma is inevitable with preventable illnesses—and maybe some is even useful. In my opinion, people who were medically cleared for the COVID vaccination did have a moral obligation to get it, because getting that vaccination not only preserved personal health but also shut down a line of potential transmission. If it is effective to shame people into getting the vaccine for the sake of their loved ones or society in general, perhaps that type of shaming is appropriate.  

And I must confess I had little sympathy for people who refused the adequately tested and extremely safe vaccine and subsequently acquired COVID. I may not have been affirmatively stigmatizing those people, but my sentiments seem just a few hops down the spectrum from those who had little sympathy for my HIV diagnosis given that I could have taken precautions to avoid it. 

Even though I’d been doing this work for many years—and took all the appropriate steps to ensure I did not pass COVID to anyone else—I still managed to internalize that bit of blame and the stigma that comes with it.

A certain amount of scaring and shaming people into acting to advance the common good has always been a part of the public health playbook. Those were certainly the tactics used to encourage people to engage in safer sex, and it was the tremendous fear of HIV instilled in people by those campaigns that helped foster the intense stigma that still surrounds HIV today. Do we really think public health campaigns should not use such scare tactics or promote a moral obligation to protect others? Those campaigns undoubtedly saved lives over the course of the HIV epidemic. Instead of disavowing such tactics altogether, maybe public health has an obligation to weigh the benefits and harms of such messaging—and when it is used, to do all it can to mitigate the ancillary harms.

Public health officials, it seems, have been doing some of this balancing when it comes to MPX. MPX presented many of the challenges as HIV, because it is transmitted primarily through prolonged intimate contact and initially grew most rapidly within GBT communities. First, it must be acknowledged that public health officials were on top of this epidemic relatively quickly as compared to HIV. Second, they seem to have taken appropriate steps to address the stigmatizing original name. Third, they targeted the limited vaccines to those most affected, despite the fact they were particularly sexually active GBT people. (There were even some mobile vaccination units set up outside of bathhouses. Terrific!)  

And fourth, they got the public message out to the most affected communities. One friend of mine criticized this messaging campaign because it seemed to imply MPX was a “gay disease.” But this is one of those instances in which the benefits must be weighed against the harms. Sexually active GBT people needed to know they were at a significant risk and that they could take steps to protect themselves; if that meant some people would think MPX was a “gay disease,” that seems an acceptable harm (which could be mitigated over time) to ensure the urgent health messages and prevention tools got to those most at risk.

Don’t get me wrong—the MPX response was not uniformly effective in avoiding stigma. One misstep I witnessed involved an expert on television saying public health’s job was simply to “call balls and strikes” in sharing data about the groups most affected (no it’s not!) and explaining the whole gay community should not feel stigmatized because it was just the most promiscuous part of the community that was at higher risk. Oh good, we will just stigmatize very sexually active gay men. Ugh! Another misstep involved the lasting red mark left on people’s forearms (including mine) by intracutaneous vaccinations, visibly identifying those who are at higher risk for MPX—though I understand those vaccinations are now being offered in less conspicuous places.

And there may have been other missteps not directly related to stigma (for instance, it is not yet clear what role the public health response played in creating or exacerbating racial disparities surrounding MPX); but overall, it seems public health officials have learned some of the lessons from previous epidemics.  Here’s hoping they continue to evolve and learn from past mistakes, not just to address stigma in the context of HIV, COVID and MPX but also to better prepare us for the next epidemic. And if the next epidemic could hold off for at least a decade or so, that would be appreciated—we’ve got enough on our plates right now!