LGBTQ people fear invisibility in vaccine data
With few states collecting information, it’s unknown how many are getting shots
When Josie Nixon visited her health insurer’s website seeking a coronavirus vaccine, she felt invisible: On a registration form that collected personal and demographic information, the 29-year-old Denver resident had to select “other” for her gender.
There was no option for “transgender woman.”
Her experience was a stark reminder, she said, that the nation’s estimated 11.3 million LGBTQ adults still have a long way to go toward reaching equity in health care and treatment in the U.S.
Advocates and health experts are concerned that Nixon, like millions more in this population, will be unseen in a vaccine rollout for which data has revealed searing inequities across racial and socioeconomic lines. Communities of color and other marginalized groups have faced some of the most severe coronavirus outcomes yet have received a smaller share of vaccines. LGBTQ people could face similar problems but may be overlooked because they are not counted.
Unlike with racial and ethnic data, the collection of sexual orientation and gender identity data is scattershot at best, captured in only a few states and territories.
The collection of this data would increase the visibility of vaccine disparities, advocates say, and allow policymakers and health care providers to more nimbly and equitably allocate resources and craft messaging campaigns for members of these groups. That is important because they have routinely experienced health disparities and often mistrust the health care system — a result, in part, of a history of medical mistreatment.
Many doctors, for example, refused to treat those infected with HIV during the early stages of the crisis. It was only in 1987 that the American Psychiatric Association stopped treating homosexuality as a mental disorder, while “gender identity disorder” was treated as such until 2013.
Today, many in this population continue to be turned away by doctors for emergency, pediatric and other forms of care. In some states, such as Arkansas, doctors will be able to legally withhold medically necessary treatment from LGBTQ patients.
Experts fear this historical and continued mistreatment could deter even those willing to receive a vaccine from seeking one.
Adding sexual orientation and gender identity data to providers’ vaccine registration forms, then, can also serve another purpose, advocates say: It signals an affirming, safe space for this population of people, which could help address vaccine hesitancy.
A number of national surveys and studies have found that LGBTQ people are more likely to face hurdles to health care, from lack of transportation to outright denial of care.
The pandemic may also be exacerbating some of these barriers. Trans Lifeline, a crisis hotline, said that calls from people unable to access care have more than doubled since before the pandemic.
And when people from LGBTQ populations first enter a medical setting, they often fill out intake and registration forms that ask for age, race and ethnicity as well as gender. But the latter most often refers only to the sex a person was
assigned at birth, not the gender with which they identify, and leaves out questions of sexual orientation. For some, not being represented on medical forms is yet another example of marginalization.
“So many people define me by my transgender identity,” said Nixon, who works as a development coordinator at Out Boulder County, a nonprofit organization that provides services and education to local LGBTQ residents, and who has been denied
care at least twice from clinicians. “But then when it finally comes down to it, they don’t actually care to ask me that identity when we’re dealing with a pandemic or trying to get a lifesaving vaccine.”
Others, however, disagree with the idea of reporting sexual orientation and gender identity data when seeking a COVID-19 vaccine. Jaden Janak, 25, a transmasculine, nonbinary doctoral student in Black Studies at the University of Texas at
Austin, said that while it is important to have an option to self-report this data, that information should not be given out unless it is necessary. “I don’t feel like the nurse that I’m going to see for 30 seconds needs to know that about me,” they said.
There is also the question of how such data would be stored and used. “As with any sort of tracking, there’s always another side, which is surveillance,” they said. Compiling this data could put “already oppressed people into an even more precarious situation.”
Still, even if some people are hesitant to divulge such data, research shows that clinicians overestimate how many patients would refuse to self-report. A 2017 study revealed that about 80% of clinicians believed patients would be hesitant to provide this data, but only 10% of patients reported they would refuse to do so.
Despite the paucity of data, the CDC notes that LGBTQ people may be more likely to suffer severe COVID-19 outcomes than heterosexual people, in part because of a higher prevalence of preexisting conditions, including heart disease, diabetes, asthma, cancer and obesity.
Not knowing how many of these people have received a COVID-19 vaccine is a problem, advocates say.
Agencies rely on population data to make policy decisions and direct funding, and advocates say that failing to collect sexual orientation and gender identity data on COVID19 vaccine uptake could obscure the real picture and prevent vaccine distribution decisions and funds from positively impacting this population.
Transparency in how that data would be used, experts say, would also be important in helping this population to report this data at vaccination sites, rather than leaving fields blank. And the time to do it, they say, is now.
“We have to do better at tracking the disparities and figuring out how to equalize people’s access to health care in between epidemics,” said Brad
Sears, founding executive director at the Williams Institute in Los Angeles, which conducts research on sexual orientation and gender identity law and public policy, “because the next one is likely to come.”