History doesn’t have to repeat itself with stigma and monkeypox

Ricky (not his real name), is a patient of mine: a young, gay man with a gentle soul and well-controlled HIV. He recently went to his local emergency department with a rash on his face, excruciating pain in his abdomen, and bright red blood that filled the toilet every time he had a bowel movement. Those triaging him thought the rash might be monkeypox, so they rushed him into an isolation room where he sat, alone, seeing under the door the shadows of feet going back and forth in the hallway. No one came for hours.

The doctor who finally entered the room was adorned in full personal protective gear — face shield, mask, gown, and gloves — and stood as far from the bed as possible, as if Ricky was somehow radioactive. The doctor briefly stepped in to swab the rash, prepared it to send to a lab for monkeypox testing, then left.

“The whole time I was there, no one even touched me — not even the doctor who was gowned,” Ricky told me later. “They just sent me home like I was nothing.”

They also never called with his test results, so after a week he called me, his primary care HIV doctor. I immediately admitted Ricky to Bellevue, New York City’s main public hospital, where I lead a group of infectious disease physicians.

Through the haze of my protective goggles, I saw Ricky, looking terrified, grappling with the stigma and shame that is traveling along with the monkeypox outbreak. With my gloved hands I grasped and held his. Doing that made me think of the days I’ve heard about in the 1980s, when countless young gay men with HIV suffered without the healing power of the human touch.

Ricky is one of thousands of LGBTQ+ people now struggling with the same scenario, in big cities from Washington D.C. to San Francisco and Minneapolis to Houston, and in small towns from Appleton, Wisconsin to Waco, Texas.

The monkeypox virus arrived in the U.S. at a terrible time: right before Gay Pride events across the country, when LGBTQ+ people celebrate the freedom of being whoever they want to be and loving whoever they want to love.

This virus spreads mainly through skin-to-skin contact, and can affect anyone. But in this outbreak, it has spread like wildfire through sexual networks, as HIV did — and continues to do — in the LGBTQ+ community.

The slow response of the U.S. public health system has galvanized a community that has always had to protect itself. ACT UP NY, an HIV/AIDS advocacy organization central to the efforts to fight HIV/AIDS in the 1980s and 1990s, has been re-energized because of monkeypox. After weeks of pressure from grassroots organizations, the federal government finally declared monkeypox to be a public health emergency. But at every level — information sharing, community education, vaccination, testing, and treatment — its response has been reactive and ineffective at controlling the spread of monkeypox.

As a member of the gay community, I am heartbroken and angry to see history repeating itself.

Bellevue Hospital is one of the few sites in New York City offering tecovirimat (TPOXX), a smallpox drug that experts hope also has activity against monkeypox. It is available only through a labor-intensive process. That makes treating this infection an adventure in ingenuity and cooperation, due more to systemic barriers than to the virus itself.

I started an informal network of infectious disease providers who are treating their patients with monkeypox to share best practices and challenging experiences in the face of bureaucratic hurdles and social injustice. A common theme in this group is how powerfully stigma has dictated patients’ experiences.

Health care providers aren’t above responding to that stigma: patients often have to deal with providers who refuse to examine them or treat their symptoms.

“One of my patients went to a hospital, was diagnosed with monkeypox, and was told there was nothing they could do,” Jason Zucker, an infectious disease doctor at Columbia University Medical Center, told me. “His friend eventually brought him to us for treatment, and out of over 100 patients I’ve seen, he has the most severe disease — horrible facial lesions with destructive scarring. He was so defeated and embarrassed.”

Had this outbreak been among young children in classrooms and summer camps across the country, the public health response would almost certainly have been swift to protect them. But it happened among a community whose lives are undervalued and whose rights are under attack, and has escalated into a mass trauma event for the LGBTQ+ community. There’s a palpable sense of frustration among my infectious disease colleagues since it feels like we haven’t learned at all from the past.

But lessons from the history of HIV/AIDS might show a path forward in policy and approach to prevent stigma from influencing the spread of monkeypox and the treatment of people with it.

When HIV first emerged in the U.S., it was thought of mostly as a disease of white gay men on east and west coasts. This led to poor public health messaging to gay men of color, who from the beginning showed disproportionately high rates of HIV/AIDS. The early stigma attached to white gay men meant that Black and LGBTQ+ communities weren’t given the resources or accurate public health messaging to respond to this threat.

Nearly all new monkeypox cases reported to the Centers for Disease Control and Prevention between May 17 and July 22 were among men who have sex with men. Forty-one percent of cases were among white men, while 28% in Hispanic men and 26% were in Black men, both groups that already face a disproportionate burden of HIV. Racial inequities in monkeypox infection are emerging, in part because of messaging that the risk of acquiring the disease is simply tied to the amount of sex one has — when it’s equally about sexual networks.

The history of HIV/AIDS also shows that access to vaccination, care, and treatment must be assured for the sometimes-forgotten groups within the LGBTQ+ community to avoid poor monkeypox outcomes.

“We’re actively talking about trans and nonbinary folks being ignored in the vaccine rollout, bisexual folks who may not be part of the response, and cis-female sex workers who are being turned away when they ask to be vaccinated,” says Jason Rosenberg, a longtime member of ACT UP NY.

The failure to prioritize these communities early on in the HIV epidemic because of how U.S. culture has stigmatized their existence has meant the spread of HIV in these groups to unacceptable levels, and failing to end the HIV epidemic nationally. Monkeypox shouldn’t share the same fate.

It was only when HIV began spreading beyond the LGBTQ+ community that the government prioritized a response to the disease. Monkeypox has already started affecting populations outside the gay community, like young children and immunosuppressed individuals. In addition to bringing vaccination to the populations with the most need, and to unconventional places like sex parties and gay clubs, the government must drop the barriers to accessing treatment and consider an emergency use authorization for tecovirimat for the most severely affected individuals. It must also provide funds for testing and clinical care of people with monkeypox, as it did with Covid-19, and support research into the long-term effects of the dramatic, acute presentations of monkeypox virus now being seen in clinics.

The stigma of a disease, especially a new disease, shapes personal and systemic behaviors that allow infectious diseases to thrive. I worry about Ricky, who will live with the pain of his experience for years, adding it to a mental rolodex of stigmatizing experiences related to living as a gay man of color with HIV in America. I worry about the breach of trust with the gay community left in the wake of this response. And I worry about the cities and towns throughout the country where people are similarly languishing in isolation.

One thing will remain true, though — history doesn’t have to repeat itself.

Ofole Mgbako is a primary care HIV doctor, section chief of infectious disease at NYC Health + Hospitals/Bellevue, and assistant professor of medicine and population health at NYU Langone. The opinions expressed here are the author’s and do not necessarily reflect those of his employers.