Stigma is one of the reasons millions of HIV-infected individuals did not get tested early on in that epidemic. Now, stigma is among the reasons we may not make our way out of the COVID-19 pandemic. The same fearmongering behind HIV stigmatization underpins the COVID-19 response, causing us to lose vital time in our public health efforts to contain a global pandemic that has already claimed the lives of over 607,000 Americans.
With HIV, lay people and healthcare workers alike feared the spread of a disease that had not been seen in humans until its discovery in 1981. They isolated from infected individuals and, in some cases, drove them out of their neighborhoods and communities. While these efforts were intended to create a divide between the healthy and the sick, in actuality, they resulted in many people living with HIV/AIDS delaying life-saving testing and treatment. The end result was that HIV continued to spread unimpeded in the very communities that were trying to escape it.
The same dynamic is happening now with COVID-19.
It’s why so many healthcare workers have resisted President Biden’s framing of COVID-19’s rising rates as a “pandemic of the unvaccinated.” When we tell the public that COVID-19 is a disease of the unvaccinated, we are placing distance between our populations. And, as we learned from HIV, treating an infectious disease like it can be kept among a select few only drives the kinds of behavior that negatively impact us all.
As public health advocate and antiracist scholar Dr. Camara Jones states, America suffers from a belief in the individual over the collective. This belief is killing us. Because a belief in the individual leads us to solely blame an individual for having a condition, rather than seeing all the ways in which our interconnected social and economic policies contributed to that individual’s choices and disease state.
The hard-learned lessons of HIV/AIDS management have shown us that stigmatized language for a disease that has potential widescale spread only delays the implementation and uptake of protective measures, in this case with COVID-19 vaccination. It was not until we directly addressed stigma that HIV rates started to fall in many places, because patients felt comfortable to get tested, take medications, and openly draw upon their support systems to remain healthy.
Similarly, with the COVID-19 public health response, we must create an environment where individuals who may be anti-COVID-19 vaccination can walk back from that place of resistance. We can do this in a few key ways. First, we must avoid using divisive language that suggests an “us-versus-them” framing. COVID-19 does not discriminate, and we should reinforce how we are all interconnected in our success (or failure!) with its management and eradication. Second, we must avoid punitive consequences to vaccine mandates. While vaccine mandates or opt-out testing are important incentives, pathologizing those who are slow to vaccinate will only lead to further entrenchment and divisiveness.
Finally, we must reframe every COVID-19 vaccine denial as a failure of the collective rather than of the individual. We must ask ourselves what failed in their education, social support network, and socioeconomic realities that led them to their decision and ask how we can address these obstacles to move them to a place of yes. The tools required to do this work are using non-stigmatized engagements from trusted messengers to form one-on-one connections. Ideally, former COVID-19 deniers or antivaxxers would serve as these trusted messengers, as their authenticity will be appreciated among those who are still resistant to vaccination.
Just as the name, blame and shame approach did not work for HIV, we should not expect it to work for COVID-19. Until we address our framing around COVID-19 deniers and vaccine hesitant members of the public, this pandemic will continue to have the upper hand and we will all, each of us—irrespective of vaccine status—continue to suffer the consequences.
Dr. Stella Safo is an HIV primary care provider and public health practitioner at the Mount Sinai Health System in New York. She is the Founder of Just Equity for Health which uses care model design, advocacy and education to build effective and equitable healthcare delivery models.