Two gay friends in New York infected with monkeypox in July fought to get limited antiviral medication to relieve excruciating pain caused by anal-rectal lesions. Sebastian Kohn, who works in health-care philanthropy, prevailed in four days after haranguing his doctor’s office and the local health department.
“I’ve never cried sitting on a toilet in my entire life. I cried so many tears, I was wailing,” said Anderson, a bartender without health insurance who relies on free clinics. “It’s another reminder of inequities of the health-care system.”
The struggle for limited resources as tens of thousands of at-risk gay and bisexual men try to get vaccinated, tested and treated during the growing monkeypox outbreak has exposed deep disparities in the gay community. While urban professionals scramble to protect themselves from a disease that can cause searing symptoms and force weeks of isolation, people of color, lower-income individuals and those living outside large cities face even greater challenges accessing care for the latest viral threat hanging over gay life.
The Biden administration declared a public health emergency on August 4, nearly two weeks after the World Health Organization deemed monkeypox a global emergency. Anyone can contract the virus, which spreads through close contact, including during sex. But the outbreak, which has infected more than 6,600 Americans, is concentrated in men who have sex with men, a group that has long endured discrimination by the health-care system.
Some advocates and experts worry that the suffering of gay men, who were stigmatized for their sexual activity and denied treatment during the AIDS epidemic, is once again being dismissed.
Testing was especially limited early in the outbreak, largely dependent upon physicians’ willingness to undergo lengthy consultations with health authorities.
TPoxx, the only antiviral available to treat this disease, is prescribed under limited circumstances because it is not approved for monkeypox. Experts worry that doctors in underserved areas are not equipped to handle the stringent protocols to provide the drug, even after federal officials eased requirements.
And as the country awaits millions of vaccine doses the federal government expects to arrive in coming months, there are not enough shots to protect all sexually active gay and bisexual men with the Jynneos vaccine, believed to work before and after exposure to the virus.
“We are essentially rationing health care,” said Anthony Fortenberry, chief nursing officer at Callen-Lorde Community Health Center, an LGBT provider in New York City. “Those that are most connected and privileged are able to access those resources.”
The Centers for Disease Control and Prevention has limited visibility into the racial disparities in the monkeypox response, with only a portion of states and cities reporting demographics for cases, testing and vaccinations. Most monkeypox patients are people of color in a sampling of cases where race and ethnicity are known, a CDC official told clinicians Tuesday, with 38 percent White, 32 percent Latino and 26 percent Black.
Black people account for just 17 percent of the 233 patients who received TPoxx, a subset of all recipients where demographic data is available.
Monkeypox causes an illness that lasts several weeks with flu-like symptoms, swollen lymph nodes and a rash that spreads throughout the body. While no fatalities have been reported in the United States, some patients have been hospitalized to manage pain from lesions around the genitals. Experts expect the virus to circulate outside the gay community, noting it can spread inside households and through non-sexual skin-to-skin contact while dancing or cuddling or by sharing contaminated clothing or bedding.
Activists say focusing on equity early on is essential, because they worry pressure on government health agencies to act will wane as the most privileged members of the gay community get vaccinated or treated.
“When the White gays are no longer paying attention to it, they move along because they got theirs,” said Matthew Rose, an HIV activist in D.C. who is Black and gay. “The attention has moved along, the resources moved along.”
As of July 14, Whites in D.C. made up 65 percent of monkeypox cases and 76 percent of the vaccinated.
Gay and bisexual men in most of the country are still waiting to sign up for shots, with only 330,000 doses shipped to states as of July 27. Nearly two dozen states had received fewer than 1,000 vaccine doses from the federal government, and some large cities had received tiny allotments, including 200 in Baltimore.
In Pittsburgh, Nathan Malachowski, a 30-year-old nursing student, worried about contracting monkeypox and having to miss weeks of school and clinical training, along with his bartending income.
But when he tried to learn more about the vaccine, he saw no information on the Allegheny County Health Department website. He called the county immunization clinic July 14, only to be referred to the health department, which, in a dizzying carousel, referred him back to the vaccine clinic.
“My interest was getting ahead of the game. I don’t want to be exposed to it and deal with the pain and associated problems,” said Malachowski, who is White and identifies as queer.
Allegheny County health department officials said they were able to successfully field hundreds of other calls asking for monkeypox information. The department recently launched a webpage about monkeypox and has retrained staff to prevent others from experiencing the runaround Malachowski endured. Malachowski called back and on Monday was among the first to get one of the limited vaccine doses available to those without a confirmed exposure.
Health officials acknowledge parts of the monkeypox response have been inequitable and are trying to dramatically ramp up testing and vaccination and increase access to therapeutics for disadvantaged populations.
“We are moving quickly, but the criticism is important and we need to hear it,” said Demetre Daskalakis, a CDC official who has been coordinating with LGBT groups on the monkeypox outbreak. “All equity concerns are completely valid.”
Even those with access to money and health care have felt abandoned during the outbreak, contending government and health officials have failed to respond to the suffering of gay men with urgency.
Aaron Backman, a White 33-year-old San Francisco tech recruiter, said he has struggled to get doctors to take his monkeypox case seriously even though he developed throat lesions that made eating even a piece of banana feel like razor blades slicing his throat. He said he received conflicting information from his doctor’s office and local health officials about whether he would qualify for treatment, which he never received.
“I feel like public health doesn’t really care if gay men die or not,” Backman said.
In North Carolina, a White Durham resident said a doctor who examined lesions around his mouth in early July quickly dismissed monkeypox as a potential diagnosis even though he had risk factors as a gay man with recent travel and high-risk sexual activity in Europe, where the outbreak started.
The 29-year-old university researcher, who spoke on the condition of anonymity to protect his medical privacy, said he had to call state and local health officials to pressure them to authorize a monkeypox test, which came back positive.
He called the state’s top public health official, Kody Kinsley, to share his frustrations about his ordeal and press him on how less-savvy patients could advocate for themselves.
“It’s the folks with lack of access and lack of experience and lack of chutzpah perhaps that always fall off the margins, and that is the kind of cornerstone battle of health equity we are always fighting,” Kinsley told the patient, who provided a recording of the call to The Washington Post.
In an interview, Kinsley said North Carolina’s monkeypox cases are disproportionately among Black men who have sex with men. As the state receives more monkeypox vaccine doses, officials plan to set up clinics at historically Black colleges and universities. “We need to make sure those vaccines are getting in the arms of people most at risk,” Kinsley said.
Local leaders in early monkeypox hot spots with large gay populations, including New York Mayor Eric Adams (D) and San Francisco Mayor London Breed (D), have been placing pressure on the Biden administration to provide more monkeypox vaccine doses, in a testament to the growing political power of the LGBT community.
The United States lagged behind other countries, including the United Kingdom and Canada, in proactively vaccinating gay and bisexual men against monkeypox.
The first 300 appointments for vaccine doses in D.C. were booked in less than 15 minutes after the online portal went live in late June. A San Francisco LGBT organization had nearly 2,000 eligible people on its waitlist in early July, when it had only 90 doses from the federal government. Los Angeles has restricted eligibility for vaccine doses to those who are taking daily medication to prevent HIV, have been diagnosed with gonorrhea or early syphilis within the past year, or recently had sex at a public venue.
New York City was the first city to allow sexually active gay and bisexual men, not just those with confirmed exposures, to sign up for vaccination appointments ahead of the city’s Pride celebration in late June. Some advocates criticized the approach as favoring the privileged who were able to wait in line for hours in the middle of the workday on the first day shots became available at a clinic in Chelsea, an upscale historically gay neighborhood in Manhattan, or spending hours on overloaded websites and on hold with clinics trying to book an appointment. City health officials have since set aside appointments for referrals from providers caring for high-risk patients in an attempt to vaccinate more people from disadvantaged backgrounds.
Henry Philyaw, a 42-year-old Black bartender and freelancer writer in Brooklyn, turned to what he described as a “Black queer underground railroad of assistance,” an informal network of men sharing leads about how to get shots. He was able to schedule his vaccination at a Harlem clinic after getting the direct phone number of a person booking appointments. When he arrived for his first dose in mid-July, Philyaw found a striking contrast between the staff administering the shots, who appeared to be exclusively people of color, and the people getting the shots, who looked mostly White.
Philyaw said he’s trying to help close that gap by directly messaging dozens of queer Twitter followers of color to help them score appointments, too.
“Me working with a network of other people of color to get vaccination appointments is working, but it really sucks we have to do that,” said Philyaw, who is also at higher risk for serious complications from monkeypox because of a weakened immune system from HIV.
Health providers in other parts of the United States are looking to avoid what they saw as an inequitable rollout of the vaccine in New York.
Seeing the reports of heavily White crowds in majority Black and Latino neighborhoods in New York, a major AIDS services organization in the Atlanta area decided to prioritize its existing patients, who are mostly Black and Latino, for its first vaccine clinics over the broader public. Local data had shown monkeypox cases in Georgia were disproportionately among people living with HIV.
“Not everyone shares the same level of vulnerability, at least at this point,” said Justin Smith, who oversees the monkeypox vaccination efforts for Georgia’s Positive Impact Health Centers, “so we have to think about who has the most potential to be experiencing harm.”
Jenna Portnoy and Dan Diamond contributed to this report.