Frustration builds in LGBTQ community over government response to monkeypox

Frustration builds in LGBTQ community over government response to monkeypox

And Garrett-Pate is one of the lucky ones.

His partner works an hourly job, so when his doctor recommended that he get the vaccine, he had to go on his lunch hour. After two hours in line, he gave up and went back to work. He had to start the process over again another day in order to get vaccinated.

It’s a scene playing out in public health departments and clinics across the country as the monkeypox outbreak spreads.

“State and local public health agencies are doing their best with the resources they have, but the federal government has not done enough and are often not acting fast enough to protect the LGBTQ community,” Garrett-Pate said.

“There has not been an aggressive response from the federal government and, unfortunately, even from the White House, a White House that should be leading right now,” he said. “This is not about pointing fingers. But at the end of the day, the buck stops somewhere. And we don’t have the resources that we need to protect the community.”

Garrett-Pate is the managing director of external affairs for Equality California, an LGBTQ+ civil rights group. It and three other organizations sent a letter last week to Dr. Rochelle Walensky, director of the US Centers for Disease Control and Prevention, to demand better vaccine access, testing, treatment and, in general, better plans to mitigate the disproportionate impact that the monkeypox outbreak has had on the LGBTQ community.

Vaccines are free when people can find them, testing costs can add up, and treatments are still difficult to access.

Access has been a struggle since the monkeypox outbreak reached the US two months ago. The CDC estimates that about 1.5 million people are eligible for the two-dose vaccine, but as of Thursday, the US Department of Health and Human Services said that 338,000 doses have been delivered.

The San Francisco Department of Public Health told CNN that it requested 35,000 doses of the Jynneos monkeypox vaccine to meet the needs of the community. As of Thursday, it has received only about 12,000 doses — less than half of what it requested from the federal government.

One of the major public clinics offering the vaccine there had to shut down Tuesday when it ran out after vaccinating 600 people.

Georgia’s Department of Public Health said it has given out all 13,876 of the vaccines it received so far. Its next allocation of 34,120 will be available over the next four to six weeks. There is more demand than vaccines.

“As soon as we open up appointment slots, they are taken up within a very short mount of time — minutes,” the department’s director of communications, Nancy Nydam, said in an email.

As of Friday, New York City’s public health department website says all available appointments for vaccines have been filled at this time.

The federal government says it is working to get more vaccines distributed. HHS announced that ordering could begin this week on 786,000 additional monkeypox vaccines. The agency anticipates making about 1.9 million doses available in 2022, with an additional 2.2 million doses available in the first half of 2023.

Public health response so far

As of Friday, the United States has than 5,000 probable or confirmed monkeypox cases, according to CDC data.

Now should I worry about monkeypox? Our medical analyst explains
Monkeypox can infect anyone. But the majority of cases in this outbreak have been among men who have sex with men, including people who identify as gay, bi and transgender, according to the CDC. However, the agency says it has detailed information on only about half of the cases, and that doesn’t include information on who’s been vaccinated. It doesn’t have the authority to collect that data yet.

Since the start of June, the CDC says, it has been doing extensive education and outreach to the LGBTQ community.

The agency 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.
Doctors say search for monkeypox cases needs to look beyond men who have sex with men

“We appreciate the LGBTQ+ community and their medical and community service providers for helping us in our efforts to raise the visibility of the current situation and of the steps people take to protect their health and the health of others,” CDC spokesperson Kristen Norlund said in an email Friday.

On Thursday, the New York State Department of Health declared monkeypox an imminent threat to public health and San Francisco declared monkeypox a local public health emergency

“We have always been on the forefront of advocacy and action for LGBTQ+ health and I’m issuing this declaration to reaffirm our commitment to the wellbeing of these communities and to allow us to move more quickly to obtain and distribute the resources needed to help those disproportionately impacted,” said Dr. Susan Philip, the San Francisco public health officer.
The US has not made such an emergency declaration, which would provide more money and staff, help with data collection and help cut through red tape to better fight the outbreak.

Echoes of previous crises

Garrett-Pate and other leaders in the community see the federal response as a familiar pattern of neglect of the LGBTQ community.

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“We faced outbreaks that have turned into crises that have turned into epidemics and pandemics that disproportionately impact our community in the past, and unfortunately, in the past, public health entities starting with the CDC and FDA have not moved quickly enough or afforded these outbreaks and public health crises the urgency that they demand.”

Garrett-Pate likens the monkeypox outbreak to the AIDS epidemic, when the Reagan administration dragged its feet and, historians say, showed outright disdain for the LGBTQ community.

By 1989, the US had lost nearly 90,000 people — mostly gay, bi and trans men — to AIDS, but “the Reagan administration had all but turned its back on the AIDS epidemic, costing precious time and lives,” according to one commentary in the New England Journal of Medicine.

The Biden administration is no Reagan administration, Garrett-Pate said, and monkeypox is not AIDS. But he believes that even more recently, with Covid-19, the government failed to do enough for the community.

The CDC found that members of the LGBTQ community were likely more vulnerable to getting Covid-19 and were potentially more susceptible to severe illness. But sexual orientation and gender identity information is still not consistently captured by standard Covid-19 data collection systems.

“We saw how the pandemic disproportionately impacted the LGBTQ community, and yet we still don’t have the data collection that is needed to fully understand why that was and to what degree it was disproportionately impacting LGBTQ people,” Garrett-Pate said.

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“The Biden administration has absolutely been supportive of our community. But at the end of the day, we need vaccines, and we need them yesterday. There’s no reason it should be taking this long.”

People who work with the federal government say they are working hard on the issue.

“We have been very transparent about a limited supply and have, at every turn, really tried to overdeliver on our promises to make sure that we had vaccine sooner than we said we might have it, that we would have more to provide than we said we might have, that we could get it out to more jurisdiction than we said we might be able to do and have tried our best to really over deliver for the American people,” said a federal health adviser who requested anonymity because they’re not a government employee and they don’t speak for any federal agency.

Sean Cahill, director of health policy research at the Fenway Institute in Boston, a health organization that works with sexual and gender minorities that has treated patients with monkeypox, said that what the federal government has done is not enough.

“They’ve not overdelivered. Not even close. They’ve underdelivered. Honestly, we went from one person diagnosed with monkeypox in mid-May to nearly 5,000 people today. The US government has not done a good job controlling this,” Cahill said. “They’ve not done a good job getting vaccines into people’s arms. They mismanaged testing in the early weeks, although the CDC has done better recently. Getting treatments is still too complicated.”

Testing is crucial to getting monkeypox under control, but there's a 'shocking' lack of demand

Cahill said his organization has been advocating for the US to declare monkeypox a public health emergency.

“We really would have liked them to have a sense of urgency about this,” he added. “Community members have a huge sense of urgency. They’re trying to protect themselves. They’re trying to get vaccinated, and we need public health agencies to step up and to deliver more than they have up until now.

Some state and local officials have tried to lend their support.

California state Sen. Scott Wiener, who represents the San Francisco area, submitted a budget letter last week in which he asked for an emergency budget appropriation to support expanded testing, vaccinations and education. San Francisco has a strong health infrastructure, he said, and a LGBTQ community that’s receptive to efforts to take care of their health.

“But even here, it’s hard,” Wiener said. “Our community gets ignored. Our health is always devalued by society at large, and it’s happening again.”

Wiener said he faults the “very, very, very sluggish response by the federal government.”

Faster action may have kept outbreak in check

The lack of access is also frustrating for Christopher Vasquez, communications director of the National Center for Lesbian Rights. His organization was one of the signers of the letter to the CDC demanding a bigger response.

“We’ve known about monkeypox for 50 years. And we’ve had a vaccine for multiple years. This has been so abysmally handled, and we’re seeing upticks in cases because we didn’t get it under control when we had the greatest chance to do so,” he said.

Everywhere he goes in the community, he said, people are talking about monkeypox. They’re scared and don’t know how they can realistically keep themselves safe with a lack of vaccines.

Opinion: This monkeypox outbreak didn't have to happen

“If this were something like Covid that was affecting the entire population, we would have seen a much more robust response from the government,” Vasquez said. “I’m not claiming the Biden administration has any animus to the LGBTQ community. I just think because we’re a limited community, they didn’t put the full weight and resources of the federal government behind stopping this early.”

The federal health adviser said it’s understandable that some in the LGBTQ community are frustrated and feel left behind.

“I can totally understand the frustration,” the adviser said. “I think, in some ways, we should expect that, and we should welcome that, because they’re representing people who are suffering from a disease that is quite painful and it’s causing really significant disease. That said, I think that what we have tried to do is, again, over-deliver in our promises to the community, and at times, we find that the community doesn’t necessarily recognize the achievements that we have and moves directly on to an additional criticism.”

Some experts though have said it’s now too late to stop what we had the tools to stop earlier.
“This is another example of failure of not only the US but global public health policy toward emerging infectious diseases. They are late to the party,” said Dr. Robert Murphy, executive director of the Harvey Institute for Global Health at Northwestern University.

“Sadly, it’s the same old story: unable to quickly diagnose, unable to vaccinate high risk persons, unable to rapidly treat those at highest risk. The situation is even more frustrating because unlike what happened with Covid-19 there’s already existing technology to diagnose, treat, vaccinate to prevent monkeypox.”

Vasquez said that after two-plus years of managing the pandemic, he thought the country would have learned how to better protect public health.

“I think a lot of people within the community that monkeypox is affecting really feel left behind,” he said. “Once again, it’s been left on the shoulders of gay and bi men, MSM and trans folk to spread the word by mouth. We shouldn’t have to learn how to get vaccines here in San Francisco through Instagram stories.”

CNN’s Amanda Sealy contributed to this report.


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