A vaccine for my shame

The Covid-19 crisis has revealed all manner of injustices, from hazardous work to overcrowded nursing homes, domestic violence, and racial disparities in health. But as vaccines become increasingly available — at least in wealthy countries — the pandemic is revealing something else: the intimate details of our preexisting health conditions.

Last month, when I got vaccinated against Covid-19, it was due to a health condition I had kept hidden from many friends and colleagues: For the past 11 years, I have been living with HIV.

I’ve never lied about my HIV status, but I’ve never been public about it either. So why, upon receiving my first dose of the vaccine, did I suddenly feel moved to come out?

I got vaccinated today, because newsflash: I have been living with HIV since 2010. Fighting HIV stigma while preventing COVID-19—all in one shot! ❤️ pic.twitter.com/MQXs24s1uX

— Jonathan Cohen (@JonCohenNYC) March 3, 2021

Maybe it was because I felt self-conscious about getting vaccinated before others, and I wanted to publicly assure people that I “deserved” it.

Or maybe I wanted to send a message. AIDS-related illnesses killed 690,000 people in 2019, most of them in the world’s poorest countries. Many of these deaths could have been avoided if people had access to the support and systems to learn their HIV status and receive treatment. By revealing my HIV status, I could make a personal and political statement about fighting the silence and stigma surrounding this continuing pandemic.

Covid-19 has stirred painful memories of the early days of HIV: the hysteria over what is making people sick, the need to blame someone, the rumors and myths about how to protect ourselves.

Whether it is Covid-19 or HIV, many of us with a positive diagnosis feel shame. We blame ourselves for being irresponsible, keep our symptoms to ourselves, and wallow in self-recrimination. I was convinced for years that if I told friends and colleagues about my HIV status, they would judge me for having been sexually reckless and irresponsible. In too many cases, shame prevents us from seeking medical care or support from others, which only makes us sicker.

Political leaders often make matters worse. Instead of calling for compassion, many lie, obfuscate, and point fingers. Worse, they crack down — censoring critical health information, punishing scientists who speak out, monitoring private lives. When the Department of Justice declared in March 2020 that individuals who intentionally transmit coronavirus could be charged with terrorism, it recalled the worst impulses of authorities to criminalize transmission of HIV.

Vaccines and medicines have the power to create a different dynamic. They not only provide a clinical benefit by preventing illness and death, but they also help break the cycle of fear that stymies public health. They give people hope, a reason to come forward and learn their status, and a way to protect themselves and their communities.

When antiretroviral treatment for HIV became available in 1996, it brought millions of people from the brink of death. In so doing, it blunted the stigma of HIV by transforming the virus from a perceived death sentence to a chronic and manageable disease. This stigma lessened further in 2011 when scientists learned that HIV treatment also prevents people living with the virus from infecting others.

That was a year after I learned I had HIV. Realizing that if I followed my treatment regimen I would no longer be infectious to others helped my fear dissolve. I gained pride in knowing and dealing with my HIV status. My own health became bound up in the health of my community.

This experience gives me a unique perspective on the Covid-19 vaccine. My eligibility for the vaccine not only protects me from the potential added risk of contracting the coronavirus while being HIV-positive but, if early research proves true, it also prevents me from infecting others with Covid-19. Far from a disability, my HIV status has become a privileged opportunity to help others.

This is true at a community level as well. The closer we edge toward herd immunity, the further we get from the fear, finger pointing, and blame that marked the beginning of the pandemic. We return not only to our livelihoods and physical intimacy, but also to our collective humanity.

Of course, the ability to get the vaccine is currently limited to those living in a handful of wealthy countries that have hoarded the global vaccine supply. My U.S. address is as much of a prerequisite for the vaccine as my HIV status. By acknowledging my privilege in receiving the vaccine, I also join the global call for vaccine justice for all.

The largest lesbian, gay, bisexual, and transgender synagogue in the U.S., of which my husband and I are proud members, takes its motto from Psalm 118: “The stone that the builders rejected has become the cornerstone.” We take this to mean that LGBT people, having been rejected and ostracized, are pillars of our American Jewish community. The same is true for people living with HIV.

This, I now realize, is why I disclosed my HIV status after I got vaccinated. With the jab came a shot in the arm: I have nothing to hide. I have something to give.

Jonathan Cohen is the director of the Open Society Foundations’ Public Health Program.