Two gay friends in New York who were infected with smallpox fought in July to get limited antiviral medication to relieve excruciating pain caused by anal-rectal lesions. Sebastian Kohn, who works in the healthcare philanthropy, prevailed in four days after harassing his doctor’s office and the local health department.
But his friend Khori Anderson, an undocumented immigrant from Jamaica, gave up after an agonizing week, unable to get the drugs because official test results from the city’s health department were delayed.
“I have never cried sitting on a toilet in my entire life. I cried so many tears, I was crying,” said Anderson, a bartender without health insurance who relies on free clinics. “It’s another reminder of the inequity of the health care system.”
The struggle for limited resources and thousands of at-risk gay and bisexual men trying to get vaccinated, tested and treated during the escalating monkeypox outbreak has resulted in great disparities within the gay community. While urban professionals can successfully protect themselves from a disease that can cause severe symptoms and weeks of intense isolation, people of color, low-income individuals and those who living outside big cities to access care for the latest viral threat hanging over the gay world. .
The Biden administration is weighing whether to declare a public health emergency now that the World Health Organization has deemed smallpox a global emergency. Anyone can catch the virus, which spreads through close contact, including during sex. But the outbreak, which has infected more than 4,600 Americans, is targeting men who have sex with men, a group that has long suffered 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 being dismissed again.
Testing was particularly limited early in the outbreak, largely dependent on physicians’ willingness to undergo lengthy consultations with health authorities.
TPoxx, the only antiviral available to treat this disease, is prescribed under limited circumstances as it is not approved for monkeys. Experts worry that doctors in underserved areas are not equipped to handle the strict protocols for providing the drug, even after federal officials relaxed the requirements.
As the country waits for the millions of doses of vaccine the federal government hopes will arrive in the coming months, there are not enough shots to protect all sexually active gay and bisexual men with the Jynneos vaccine, which is believed to be working before and after exposure to the virus.
“We’re basically rationing health care,” said Anthony Fortenberry, chief nursing officer at Callen-Lorde Community Health Center, an LGBT provider in New York City. “The most connected and privileged people are able to access those resources.”
The Centers for Disease Control and Prevention has limited visibility into racial disparities in chickenpox response, with only some states and cities reporting demographics for cases, testing and vaccination. In a sampling of cases for which race and ethnicity are known, most of the moncaide patients are people of color, a CDC official told clinicians Tuesday, with 38 percent White, 32 percent Latino and 26 percent Black.
Blacks make up 17 percent of the 233 patients who received TPoxx, a subset of all recipients for whom demographic data is available.
Cranberry causes an illness lasting several weeks with flu-like symptoms, swollen lymph nodes and a rash that spreads throughout the body. Although no deaths have been reported in the United States, several patients have been hospitalized for management of pain from lesions around the genitals. Experts expect the virus to circulate outside the gay community, noting that it can spread within families and through non-sexual skin-to-skin contact while dancing or cuddling or by sharing contaminated clothing or bedding. .
Activists say an early focus on equity is critical, as they worry that pressure on government health agencies to act will lessen as more privileged members of the gay community receive vaccinations or treatment.
“When the White gay people don’t pay attention to it anymore, they move on because they got theirs,” said Matthew Rose, a Black gay HIV activist in DC. “The attention has moved on, the resources have moved on.”
As of July 14, Whites in DC accounted for 65 percent of chicken pox cases and 76 percent of vaccination cases.
Gay and bisexual men in most of the country are still waiting to sign up for shots, and only 330,000 doses have been sent to states so far. Nearly two dozen states have received fewer than 1,000 doses of vaccine from the federal government, and several major cities have received tiny allocations, including 200 in Baltimore.
In Pittsburgh, Nathan Malachowski, a 30-year-old nursing student, worried about getting a monkey 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 didn’t see any information on the Allegheny County Health Department website. He called the county immunization clinic on July 14, only to be referred to the health department, which, in a dizzying roundabout way, sent him back to the vaccination clinic.
“My interest was getting ahead of the game. I don’t want to be exposed to it and deal with the pain and issues that come with it,” 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 requesting information about monkeys. The department recently launched a web page about a spiny monkey and re-appointed staff to prevent others from experiencing the run around Malachowski. Malachowski called back and on Monday was one of the first of the limited doses of vaccine available to those without confirmed exposure.
Health officials acknowledge that parts of the smallpox response are disproportionate and want to significantly increase testing and vaccination and increase access to therapeutics for disadvantaged populations.
“We are moving fast, 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 monkey outbreak. “All equity concerns are completely valid.”
Even those with access to money and health care felt abandoned during the outbreak, arguing that government and health officials failed to respond urgently to the suffering of gay men.
Aaron Backman, a 33-year-old San Francisco white tech recruiter, said he struggled to get doctors to take his case of barbed monkeys seriously even though he developed throat lesions that made eating even a piece of banana feel like razor blades. slitting 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 don’t think public health cares 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 ruled out monkeypox as a possible diagnosis even though he had risk factors as a gay man with recent travel and high sexual activity. risk in Europe, where the outbreak began.
The 29-year-old university researcher, who spoke on condition of anonymity to protect his medical privacy, said he had to call state and local health officials to pressure them to authorize the monkey test, which came back positive.
He asked the state’s chief public health officer, Kody Kinsley, to share his frustrations about their predicament and to press him about how less-than-stellar patients could advocate for themselves.
“Maybe it’s the people with a lack of access and a lack of experience and a lack of chutzpah who always fall to the fringes, and that’s kind of the cornerstone battle of health equity that we’re always fighting,” Kinsley added. the patient, who provided a recording of the call to the Washington Post.
In an interview, Kinsley said North Carolina’s chickenpox cases are disproportionately among Black men who have sex with men. As the state receives more doses of measles vaccine, officials plan to set up clinics at historically Black colleges and universities. “We need to make sure those vaccines are getting into the hands of the people who are most at risk,” Kinsley said.
Local leaders in monkey hotspots with large gay populations, including New York Mayor Eric Adams (D) and San Francisco Mayor London Breed (D), are pressing the Biden administration to provide more monkey vaccine doses. , as a testament to the growing political power of the LGBT community.
The United States has lagged behind other countries, including the United Kingdom and Canada, in proactively vaccinating gay and bisexual men against mumps.
The first 300 appointments for vaccine doses were made in D.C. booked in less than 15 minutes after the online portal went live in late June. An LGBT organization in San Francisco had nearly 2,000 eligible people on its waiting list in early July, when it only had 90 doses from the federal government. Los Angeles limited eligibility for vaccine doses to those who are taking daily medication to prevent HIV, who have been diagnosed with gonorrhea or early syphilis in the past year, or who have recently had sex in a public place.
New York City became the first city to allow sexually active gay and bisexual men, not just those with confirmed exposure, to sign up for vaccination appointments ahead of the city’s Pride celebration at the end of June. Some advocates criticized the approach as favoring the privileged who were able to stay online for hours in the middle of the workday on the first day shots were offered at a clinic in Chelsea, an upscale historic gay neighborhood in Manhattan. or spend hours on overload. websites and waiting for 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 effort to vaccinate more people from disadvantaged backgrounds.
Henry Philyaw, a 42-year-old Black bartender and freelance writer in Brooklyn, turned to what he described as a “queer underground railroad,” an informal network of men sharing instructions on how to get shots. He was able to schedule his vaccination at the Harlem clinic after getting the direct phone number of an appointment booker. When he got his first dose in mid-July, Philyaw found a stark contrast between the staff administering the shots, who seemed to be only people of color, and the people receiving the shots, who looked mostly White.
Philyaw said he’s trying to help close that gap by direct messaging dozens of handsome Twitter followers to help them score dates, too.
“I’m working with a network of other people of color to get vaccination appointments, but it’s a shame we have to do that,” said Philyaw, who is also at a higher risk of serious complications from monkeys because of a system weak immunity from. HIV.
Health providers in other parts of the United States are trying to avoid what they saw as an uneven rollout of the vaccine in New York.
Seeing reports of overwhelmingly 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, mostly Black and Latino patients for its first vaccine clinics for community in general. Local data showed that monkeypox cases in Georgia were disproportionately among people with HIV.
“Not everyone has the same level of vulnerability, at least at this point,” said Justin Smith, who oversees smallpox vaccination efforts for Positive Impact Health Centers of Georgia, “so we have to think about who of which the most could cause harm. .”
Jenna Portnoy and Dan Diamond contributed to this report.