The response to monkeypox affected by the black gay community is inadequate

In July, a 35-year-old black man from the Washington, DC area transitioned from Covid-like symptoms to watching his body become overwhelmed with the aggravating, blistering boils of monkeypox. And yet he said as he endured the anguish and uncertainty that came with the illness, he had other, more pressing concerns.

The man, who asked for anonymity over concerns about the stigma attached to the disease, said he was troubled by how difficult it was to find information about monkeypox and that his doctor appeared to dismiss his concerns about his symptoms.

He said his case exemplifies the worrying public health response to monkeypox and follows a historical pattern of medical misconduct and deficiencies, particularly for black populations.

The man said when he went to the emergency room in early July, the doctor didn’t seem to take him seriously. “I asked her if she was aware of the latest CDC guidance on monkeypox, but she wasn’t,” he recalled. “So she had to call the CDC to even get permission to give me a test. She went on to say that it would take an hour of paperwork and stuff, so most doctors weren’t thrilled to do the tests.”

The gay man said “it was like a repeat” of some of the problems that have accompanied the Covid pandemic, when blacks in many parts of the country had less access to treatment and vaccines, according to the Centers for Disease Control and Prevention.

In the face of monkeypox, public health officials face a challenge in effectively communicating information about the spread of the outbreak without stigmatizing gay men. Public health officials interviewed by NBC News said managing this balance is critical to earning public trust to offset intense distrust of the medical establishment in the black community. The poor response from health officials, disparities in vaccine rollout and the stigma attached to monkeypox have all contributed to men wondering how the virus spreads — despite the data, experts say.

Data from the CDC found that as of July 22, 99% of the cases were men, of whom 94% reported recent sexual contact with men. The World Health Organization added that 98.7% of confirmed cases worldwide are in men, with 97.2% of those men reporting having had sex with other men.

Black men across the country have been particularly hard hit by the outbreak. Although blacks make up about 12% of the population, they account for 38% of recent monkeypox cases, according to the CDC. In Atlanta, 71% of people with the infection, which can cause painful and irritating skin lesions, are black men who have sex with men, and about two-thirds of those men have HIV, according to the Georgia Health Department.

In North Carolina, one of the few states reporting the spread of monkeypox, 70% of those infected are black men, with nearly all cases involving men who have sex with men. However, only 24% of vaccines in the state have gone to black North Carolinians.

These numbers are worrying black gay men, as well as public health experts like Dr. Jayne Morgan, director of Piedmont HealthCare in Atlanta, which hosts educational podcasts on monkeypox. She said the message must be clear about who is at risk of contracting monkeypox and what preventive measures are available, while being careful not to stigmatize certain groups of people.

“We have the tools and enough information to stem this tide,” said Dr. Morgan to NBC News. “Public health, like Covid, is about behavior. Monkeypox is behavior driven. And so the behavior can also push it in the opposite direction.”

Health experts believe that sex between men – both anal and oral sex – is probably the main reason for the worldwide transmission of monkeypox. The skin contact that accompanies sex, these experts say, is likely a much lower risk factor, citing studies published in peer-reviewed journals and reports from national, regional and global health authorities, as previously reported by NBC News.

The statistics, misinformation, and mistakes in introducing the vaccine have black gay men worried that they may experience a repeat of the response and stigma that accompanied the HIV/AIDS epidemic of the 1980s.

The 35-year-old DC resident, who no longer has monkeypox symptoms, called it “dangerous.”

David J. Johns, executive director of the National Black Justice Coalition, a civil rights organization dedicated to empowering the black LGBTQ community and people living with HIV/AIDS, said the attention monkeypox is now receiving is only happening because it isn’t -black people do this too influenced.

“The sad reality is that monkeypox is nothing new,” Johns said, adding that it has existed in Africa since the 1970s. “But because privileged white males from Western societies – particularly America – are now being affected by something that otherwise only affected available Africans, the way people think about, talk about and react to a virus is now affecting people a lot longer than we usually like to admit.”

Difficulties in diagnosis and treatment

The DC-area man said that after a weekend of activities and attending a “crowded party” on July 10, he woke up the next day “not feeling well.” He was tired and had a 102 fever and was having trouble concentrating. He left work early, believing he had contracted Covid.

He took a home test, which came back negative. An emergency room test confirmed he did not have the coronavirus. His fever eventually broke, but he had a throbbing headache for days. And he said he had “rectal discomfort” and his blood pressure was elevated. A few days later he felt better – but he noticed bumps on his face and arms.

Eventually, after some resistance, the doctor wiped the blisters on his face and wrists and sent him home with 800 milligrams of ibuprofen and a prescription for his anal pain. At his apartment, he said he was isolating in the attic. In the morning he woke up with an extreme sore throat. He returned to the ER, where the doctor had to call the CDC again to see how he should be treated since he had tested positive for monkeypox.

The doctor was advised by the CDC to give an antibiotic shot, which relieved some of the sore throat. Meanwhile, the wounds spread to other parts of his body — particularly his arms and legs.

But “it was kind of shocking,” he said, that his issues weren’t immediately addressed. He added that he was given eight different numbers to call for help. “They were trailing their feet the whole time.”

The man said he had given the health department a list of friends he was in close contact with for contact tracing. He had already advised them to see a doctor when the health department contacted them two weeks later. “And when they finally got someone, they were basically forced to say they had sex to get the vaccine,” he added, noting his friends felt pressured to say they had sexual contact with him – although some did not – to get immediate attention from healthcare professionals.

“When we talk about high-risk communities, we’re really talking about people who are kind of dissatisfied with the healthcare system,” Morgan said. “Stigma and discrimination against people in the LBGTQ community is already very high. And if you then add the black race, you have the same thing with monkeypox as you have with Covid – the black population is always the most vulnerable because we have the fewest resources, the smallest outreach, and the most discrimination and stigma.”

In Los Angeles in early July, another black man, who also asked not to be identified because of the stigma attached to the virus, expressed almost identical concerns as the man on Metro DC. He, too, said he didn’t think he contracted the disease through sex. When symptoms emerged, he said he was having trouble finding a place to test for monkeypox. And when he located a health center in downtown Los Angeles, the staff were “dressed and booted like I had a contagion,” he said, referring to the protective gear they were wearing.

Meanwhile, the difference between those who have contracted monkeypox and those who have access to vaccines is stark. While blacks account for about a third of monkeypox cases in the United States, the group received about 10% of the vaccines, according to the CDC.

The inequalities in vaccine distribution come as Dr. Rochelle Walensky, the head of the CDC, acknowledged that after missteps during the Covid pandemic, the agency needs to make drastic changes to better and faster respond to public health emergencies.

“We have learned less than nothing from Covid,” Stella Safo, a Mount Sinai GP who specializes in HIV treatment and founder of Just Equity for Health, told STAT News. “We went backwards.”

dr Tyeese Gaines, a doctor who practices emergency medicine in Illinois and New Jersey, said being on alert for more than two years before the coronavirus pandemic led to a “panic fatigue” that angered people to a point where they were less were able to protect themselves against monkeypox.

“We had to explain the reality of Covid-19 to people,” Gaines said. “But eventually people just don’t want to hear it anymore. Some people say, “Oh, wow, there’s another scary virus. Let me be safer.’ But there’s still a subset of people whose response to fear isn’t to become more conservative or stick to the rules, but to actually pretend they don’t exist and do the opposite.”

It hasn’t helped that there is a history of public health issues in the black community, with the demographic not always receiving the same or adequate health care. “There are still many areas that need to be improved if we are to provide equitable health care that gives everyone a fair chance at health,” Gaines said. “I don’t think we’ve fixed all that yet.”