Advocates are working to counter skepticism about a COVID-19 vaccine within the LGBTQ+ community – a marginalized population on which there’s a dearth of available data.
WHEN A coronavirus task force in Boulder County, Colorado, was considering how to disseminate newly authorized COVID-19 vaccines in December, task force member Kaylin Gray had an idea: Why not survey the local LGBTQ+ community to find out their attitudes on vaccination?
By then, questions on how to reach hard-to-access communities and hesitant populations were swirling around public health departments, where officials know that one of the keys to ending the COVID-19 pandemic is getting as many people vaccinated as possible.
The task force agreed the information would be useful, but they had to act fast. So Gray, a researcher, psychologist and treasurer of local LGBTQ+ organization Out Boulder County, designed a survey asking participants: If you could get a COVID-19 vaccine today, would you take it? The survey went out on social media in December and remained open into early January.
“If we could get 50 responses, wouldn’t that be great?” Gray remembers thinking.
Instead, 272 people responded, and their answers revealed a surprising disparity: People who identify as LGBTQ+ were more hesitant to get vaccinated against COVID-19 than straight people. Not only did the survey offer one of the first looks at vaccine hesitancy in the LGBTQ+ community, it also sparked action by local health officials to do something about it.
Now, others are taking note.
‘A Vulnerable Community’
Mardi Moore describes herself as an “old-school lesbian” and longtime activist. She came to Out Boulder County, a community organization and advocacy group, as its executive director seven years ago. Since the onset of the pandemic, Out Boulder County has worked closely with county officials to tackle financial and mental health challenges in the LGBTQ+ community.
But the survey signaled a new challenge: While 84% of respondents said they would take an available COVID-19 vaccine, 9% said they wouldn’t and 7% said they were unsure. Within that latter 16%, LGBTQ+ respondents were more likely to respond “no” or “unsure” than straight respondents (17% vs. 9%).
Meanwhile, the share of people assigned female at birth who answered “no” or “unsure” (18%) was twice that of people assigned male (9%). And among those assigned female, respondents who identified as part of the LGBTQ+ community answered “no” or “unsure” at a higher rate than those who did not. Within subgroups stratified by gender and sex at birth, the highest percentage of those who answered “no” or “unsure” were LGBTQ+ cisgender females at 26%, followed by transgender people who were assigned female at birth at 18%.
Among the 24 people overall who said they wouldn’t take the vaccine, respondents cited concerns about safety, a lack of information and mistrust of the government. One person who said they wouldn’t get the vaccine asked in a write-in section if it could have long-term effects or even cause death.
“I’d like to know how this vaccine may impact people with autoimmune disorders,” wrote another person who said they were unsure.
Survey respondents also offered their thoughts on how public officials might support people in getting the vaccine, with options ranging from providing frequent messaging to going door-to-door to provide information. One requested that people of color and the LGBTQ community not be overlooked, and another called for respecting people’s pronouns.
“Take their word for it and make it easy to get. In other words, don’t require medical records, etc,” a respondent wrote.
The survey does have its limits: It focused on one county of some 326,000 people and had under 300 respondents. Among those who provided such information, most respondents were cisgender and assigned female at birth, and nearly 90% were white. Less than 1% of respondents were African American.
Still, Gray says, the survey revealed intersections of vulnerability. For example, white LGBTQ+ people and people of color reported roughly the same rate of hesitancy.
“We think LGBTQ needs to be considered a vulnerable community in terms of hesitancy,” Gray says.
For Moore, the survey highlighted an ongoing frustration for her: A lack of data on COVID-19 vaccine safety and efficacy in HIV-positive populations, as well as a lack of data on whether LGBTQ+ communities are getting vaccinated against COVID-19. In the U.S., gay and bisexual men are the population most heavily affected by HIV.
When Out Boulder County tried to compare their results to similar studies, they came up with nothing. And while Centers for Disease Control and Prevention data-reporting categories for federal partners and jurisdictions include the sex, ethnicity and race of a person who was vaccinated against COVID-19, the agency doesn’t include sexuality or gender as an option.
The lack of data plays into the lack of trust “our community has with doctors,” Moore says. Without this information, Moore says it’s hard to design an intersectional approach: How do you message around vaccine skepticism to queer people who are also disabled or have HIV?
The Dearth of Data
As of late February, vaccines from Pfizer Inc. and Moderna were the only ones to receive emergency approval for use in the U.S. Last year, Pfizer amended its vaccine trial protocol to allow the inclusion of people living with HIV. Moderna, whose initial exclusion of people with HIV from its clinical trial sparked a Change.org petition, announced in August its intention to enroll people with the virus.
Yet, in part because of small sample sizes in the trials, needed data on the vaccines in people with HIV is not yet available. The CDC acknowledges this, while also noting that people living with HIV may be at increased risk for severe COVID-19 and may receive a vaccine.
“The first thing that we have to do is start collecting much better data on who is getting immunized,” says Dr. Chris Beyrer, an infectious disease epidemiologist and professor in the Johns Hopkins Bloomberg School of Public Health.
But simply adding another data column to be filled in is just part of the battle; getting the data from vaccine partners is another. Earlier this month, the White House said nearly half of race and ethnicity data on vaccinations was missing.
To combat vaccine hesitancy, Beyrer says large advocacy groups that have garnered trust in the LGBTQ+ community should play a role in sharing information on the vaccines, centering themselves as trusted resources. He notes that these efforts must be intersectional: The LGBTQ+ community includes people of different races and ethnicities, and of varied ages.
Beyrer also says it’s important to deliver vaccinations in settings where people feel comfortable expressing their identity.
In Philadelphia, that’s what the Mazzoni Center – an LGBTQ+ wellness organization and COVID-19 vaccine provider – aims to be. The center has administered more than 700 Moderna doses to date. Of its 7,500 patients, nearly 1,200 are transgender.
Care “should be affirming from the time you walk in,” Tatyana Woodard, a community engagement specialist for the center, says of its gender-affirming model. “Your pronouns should be respected, your preferred name should always be addressed.”
Woodard says Mazzoni Center workers have seen vaccine skepticism within Philadelphia’s transgender community. To help counter it, she led a livestream during which she and a medical provider answered questions. Woodard, a Black transgender woman, also filmed herself getting vaccinated.
“There’s a lot of stigma around COVID-19,” Woodard says. “Being from a marginalized community, we don’t have a lot of trust for government and medical providers.”
Providing the vaccine directly in an environment where people know they will be respected has helped, Woodard says. But she adds the center has been responding well to the pandemic since the start, so it’s a bit of disappointment for her not to see the same, targeted action on a larger scale.
Yet efforts to reach members of the LGBTQ+ community with vaccine messaging and the vaccine itself soon could get a needed data boost. Roughly an hour away from the Mazzoni Center – and inspired by Out Boulder County’s efforts in Colorado – the Bradbury-Sullivan LGBT Community Center in Allentown, Pennsylvania, is planning to roll out a statewide survey on vaccination in the LGBT+ community, working with four similar centers elsewhere in the state.
A goal is for the data collection to be used to improve vaccination policies, says Adrian Shanker, executive director of the Bradbury-Sullivan center. His organization is working with faculty members at Bryn Mawr College to receive institutional review board approval and analyze the data.
“We do want the ability to publish the results in ways that can be usable for improving access to the vaccine,” Shanker says.
Unlike Out Boulder County’s survey, the Pennsylvania survey will focus only on LGBTQ+ adults. Although the main focus of the survey will be vaccine hesitancy, the survey also will ask about compliance with other public health measures, including masking.
The results will be used to tailor the center’s strategy for vaccinating patients, which Shanker says will be formed by trusted messengers in the community. The center already is asking known gender-affirming physicians around the state to get certified as vaccine providers.
But Shanker says surveys alone aren’t enough: The LGBTQ+ community needs the CDC to collect more data as well.
“If we’re not counted, we don’t have the ability to best serve our community, to meet our community’s needs,” he says.
Back in Boulder County, public health officials are taking action after seeing the results of Out Boulder County’s survey. Lizbeth Mendoza, a cultural broker for Boulder County Public Health who focuses on equity, praises Out Boulder County’s commitment to collecting data and says the two organizations are working together: The public health department provides Out Boulder County with vaccine safety and efficacy information, she says, “and they tailor it to their community.”
Additionally, Out Boulder County receives funding to devote to public health issues, including vaccination, as part of a countywide consortium of community health partners.
Moore says the organization has secured $5,000 that will go toward TV and social media ads explaining and promoting vaccination. The organization also plans to launch a vaccination site.
“We will have a vaccination station where our community can come and be seen in their full selves and get the vaccine,” Moore says.
But with vaccine supply an issue in the U.S., Moore says her organization needs to think about how to retain trust. She says they won’t even release a sign-up list for vaccines until they know the county has enough doses.
“So we don’t further break and corrode the trust between the individual and health care,” Moore explains.
Beyond learning that people wanted more information on the vaccines, Mendoza says the Out Boulder County survey underscores the value in public health departments teaming up directly with trusted community partners.
“Each community, they have their own separate messengers,” Mendoza says. “So just getting to know those nuances of each community: how they like to be addressed, what are the messages that really impact them, (the messages) that really mean something based on what their experience is with the health care system. … All we want is for everybody to get to a state of better health.”
