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They, along with leaders of some national LGBTQ organizations, are frustrated and angry at the federal government for its “lack of urgency” about the ongoing outbreak.
They say they feel abandoned by the government and want monkeypox to be declared a public health emergency now.
“We are, once again, in a moment where a lack of urgency and an inadequate response has left our community filled with fear, unanswered questions and valid outrage. A moment where we have been abandoned by inaction,” Tyler TerMeer, CEO of the San Francisco AIDS Foundation, said Tuesday.
“This is unacceptable and completely preventible,” TerMeer said. “Our community of resilient people have had to once again rise up in support of one another, to educate each other and to fight for access to the resources that they need and deserve.”
Monkeypox can infect anyone, but the majority of cases in the US outbreak have been among men who have sex with men, including gay and bisexual men, and people who identify as transgender.
Since June, the US Centers for Disease Control and Prevention has said it has made a concerted effort to do extensive education and outreach to the LGBTQ community.
The agency says it has worked with the umbrella organization for local Pride committees to raise awareness. It released educational videos, engaged with groups that work with health disparities and industries whose workers may be exposed to monkeypox, and created awareness campaigns on Instagram and on dating apps popular with the gay community like Scruff, Adam4Adam and Grindr. The agency is also planning to participate in listening sessions with LGBTQ community groups.
But those efforts have not shortened the lines for vaccines or eliminated the extensive paperwork necessary to get access to treatments.
In an effort to elevate their public health response, California, Illinois and New York state have declared public health emergencies, as has the World Health Organization. San Francisco became the first major US city to declare a local health emergency last week, and New York City did so Saturday.
The federal government is monitoring the response to monkeypox across the country and will use that to consider whether to declare its own public health emergency, US Department of Health and Human Services Secretary Xavier Becerra said last week.
“We’ve made vaccines, tests and treatments well beyond the numbers that are currently needed, available to all jurisdictions who manage their public health systems,” he said.
“We will weigh any decision on declaring a public health emergency based on the responses we’re seeing throughout the country. Bottom line is, we need to stay ahead of it and be able to end this outbreak.”
Torrian Baskerville, director of HIV and health equity at the Human Rights Campaign, an organization that advocates for LGBTQ+ rights, said community members shouldn’t have had to create their own online tracking systems to figure out when and where vaccines and treatments are available because of a lack of information from local government agencies.
“Our system is not set up to respond to these emergencies effectively, especially when it affects vulnerable and often marginalized populations,” Baskerville said.
He has spoken with several members of the community who have not gotten the help they need to treat or prevent the sometimes extremely painful disease.
One man who had clear signs of monkeypox told Baskerville that he was turned away from his local health department, denied testing and treatment because there were no more appointments, even though he arrived during clinic hours.
Another man told Baskerville that he is facing eviction. Unable to work, in isolation with monkeypox symptoms for more than 25 days, he said he’d been denied medical leave three times and must spend at least five more days in isolation because he still has symptoms.
Another told him they had to lie about how many recent sex partners they’ve had because some state and local health departments have had to ration vaccines, giving them only to people who have had three or more partners in the past two weeks.
“The frustrations and concerns of gay and bisexual men and transgender men and women who are, at this moment, most impacted by [monkeypox] are very real and clear,” Bakersville said.
Several public health experts have said the US missed its opportunity to contain the monkeypox virus because it has been too slow to act.
Access to vaccines has been a struggle since the outbreak reached the US two months ago. The CDC estimates that about 1.5 million people are eligible for the vaccine, but as of Thursday, the US Department of Health and Human Services said, more than 340,000 doses have been delivered.
As of Monday evening, the US has tallied at least 5,811 confirmed or probable monkeypox cases, a number that experts say is still a significant undercount.
With limited supply and growing awareness of the virus and its sometimes-painful effects, vaccination appointments are going fast.
David C. Harvey, executive director of the National Coalition of STD Directors, said Tuesday that the organization invited public health clinic directors from across the country to a meeting with the Biden administration Monday where they talked about how this part of the monkeypox outbreak feels too familiar. Managing monkeypox is similar to the earliest days of HIV and Covid-19, he said.
“Program after program talked about the fear and stigma that gay men are experiencing in relation to [monkeypox], the shortages of vaccine, the burned-out staff, the shortages of funding to cover what has been an unanticipated public health emergency,” he said.
Harvey said that his association was pleased that the White House named two monkeypox response leaders Tuesday, but the community needs the federal government to declare a state of emergency to bring in more money and staff.
He labeled the outbreak “out-of-control” and added that it’s something many public health leaders warned would happen if the federal government didn’t act with urgency.
Congress must also act quickly to approve the $21 billion Pandemic Preparedness Act, he said, because local health officials need more money and the country needs to reduce and eliminate barriers to testing, care, vaccines and grants.
Harvey was specifically critical of Becerra, who said at a news conference last week that “everybody’s got to take the oar and row. Everybody’s got to do their part” and that local jurisdictions need to “work with” HHS on data reporting about how they are using vaccines.
Becerra said communities need to work to prevent the spread of monkeypox and hand out vaccines. Without that work, more vaccines will be necessary.
“But if everyone does their work,” he said, “can we not only stay ahead of the virus, but end this outbreak? Absolutely.”
Harvey thinks local health leaders have been going above and beyond to do what they can with the resources they have.
“States and localities really have been left to respond to many aspects of this outbreak on their own. This is contrary to the comments made by Secretary Becerra last week, when he seemed to appear to blame the states and the cities for not responding adequately,” he said. “Mr. Secretary, we are failing Americans today. And this is a public health failure that follows Covid and the various earliest days of HIV in this country. It is time for us to turn this situation around.”