The Register Citizen (Torrington, CT)
CT transgender community is under-counted in vaccination data
State data suggests that out of the 2 million COVID-19 vaccinations in Connecticut, just five of those doses have been given to transgender people, with only four fully vaccinated.
Ivan Staklo, like many, was eager to get vaccinated, but after getting his first dose, he doesn’t even want to look at his vaccination card. It’s a reminder of the “odd” experience he had in place of an exciting moment he was fervidly looking forward to.
Staklo, a transgender man from New Haven, said his first dose experience was one of “humiliation and disrespect.” His gender and name were manually changed in the system by an individual working at a Waterbury clinic because they didn’t match his official I.D. In multiple ways, Staklo said his identity was erased that day.
State data suggests that out of the 2 million COVID-19 vaccinations in Connecticut, just five of those doses have been given to transgender people, with only four fully vaccinated. An additional 3,000 individuals who have initiated vaccination are marked as “unknown,” with 1,000 fully vaccinated.
However, in Connecticut, an estimated 3.9 percent of the population identifies as LGBTQ, including roughly 13,350 transgender people aged 13 and older, according to data from the Williams Institute at the UCLA School of Law.
Experts say the need for a proper count is important, with a need to reach the community and to help educate.
“You don't know what that outreach needs to look like if you don't know who is and is not getting the vaccine,” said Jody Herman, scholar of public policy at the Williams Institute.
Without accurate data, it’s hard to know what vaccination efforts look like in the transgender community— a group that experts say has historically been hesitant to pursue medical services due to discrimination. Herman also said it’s hard to know what disparities this group experiences and what their key health indicators are if data isn’t collected.
Specific medical and hormone therapies used by transgender people could also potentially result in vaccine side effects. Silicone fillers, which many trans feminine people have, have a possible nonlife-threatening side effect with the mRNA vaccines and the Johnson & Johnson could impact patients on an estrogen therapy regimen, who are already at higher risk of clotting due to this hormone treatment, saod Katy Tierney, an endocrinology specialist and medical director of the Middlesex Health Transgender Program.
The risk of side effects remain very low, though, and Tierney still recommends transgender people get Moderna or Pfizer.
Experts like Tierney and state officials agree that the number of vaccinated transgender people is an undercount.
“I think the data is, frankly, wrong,” said Katy Tierney, an endocrinology specialist and medical director of the Middlesex Health Transgender Program. “We just don’t know how many trans people have been vaccinated.”
Some may have selected the “Other” option, while most transgender people would have just picked the gender they identify as, experts said.
Maura Fitzgerald, spokeswoman for the state Department of Public Health, said in an email that the department does not track the information providers request from patients. Instead, she said, providers report vaccination information to them through Connecticut’s immunization registry system, CTWiZ, where gender can be reported as female, male, transgender, or unknown.
When asked why it might be necessary for the state to track transgender vaccinations, Fitzgerald wrote that the department is “not aware of specific COVID-19 public health issues that would compel the separate tracking of vaccination for transgender individuals.”
Others would disagree.
“If we don’t have a systematic approach to data collection on sexual orientation and gender identity, we're only getting part of the story as to what's going on with LGBT people in the U.S.,” said Herman.
Obstacles in representation
Among several obstacles standing in the way of giving the transgender community proper representation in state data is the varied and often limiting options available for them on intake forms.
The Vaccine Administration Management System (VAMS) only has options to select “Male, Female, Decline to specify, or Other.”
Eliot Olson, Staklo’s partner, called the “other box,” the “cheap man’s shot to try and be inclusive.” He believes it is an excuse rooted in ignorance to “continue with the same system” and perpetuate trans-erasure.
The majority of local health departments, providers, and clinics used VAMS to schedule vaccine appointments, and likely had to use data collected there when reporting to the state. Some pharmacies, including CVS, also did not ask for anything beyond binary gender options.
Jude Reid, a New Britain individual who registered with multiple vaccine providers in their appointment hunt, found that the MyChart programs from organizations such as the University of Connecticut, Middlesex Health and Hartford Healthcare were more nuanced than others, but still had “problematic” language.
These forms included multiple gender identity options in addition to male and female, such as “Transgender Female MtF, Transgender Male FtM, Queer, Gender fluid, and Other.” Although more options were available, the chance of having a checkbox available for those who are nonbinary is rare, with the exception of Middlesex Health.
Reid believes the staggering range of options from one site to the next could be why the data is disproportioned.
“I know many binary trans people who would rather choose ‘Male/Female’ than ‘Transgender Male’ or ‘Transgender Female,’ since trans men are men and trans women are women,” Reid said, which could be a contributing factor as well.
Taylor Edelmann of Brookfield agreed, saying trans people are “embedded in the numbers,” but under the gender unassigned/ unknown category or the male and female categories.
It is possible that some of the transgender vaccine recipients were reported from one or more of these providers’ systems.
Questions lead to discrimination
Staklo, who works for the Trans Lifeline hotline, said almost every call received about vaccines since January has been an individual speaking about an experience of discrimination they had trying to access the vaccine in a medical setting or a fear of discrimination.
For those still making legal document changes or transitioning, a provider asking for sex assigned at birth can be difficult to navigate. Edelmann was able to easily check off “male” without a raised eyebrow thanks to matching documentation, but this isn’t always the case.
“When you’re getting a vaccine, it’s opening up the door for discrimination,” Edelmann said, because if a transgender person’s “sex assigned at birth,” doesn’t match their other documents, it inherently outs them and makes them vulnerable to discrimination.
Olson echoed Edelmann’s point and noted that in any situation where a trans person has to show identification, it becomes a matter of “prepping yourself for what’s going to happen.”
“You know something’s going to happen, it’s just a question of what and how bad,” he said. “It kind of is a continual reminder that you are not just an inconvenience but an oddity.”
When Staklo went to get vaccinated at a Waterbury site, he said his name was changed in the system to his deadname, which is his birth name that he was given before transitioning. They also changed his gender marker to the incorrect one and “proceeded to ignore me when I asked them not to do that.”
According to Edelmann and others, CVS had to “rescind” and modify it’s form after members from the transgender community made it known that the question of “sex assigned at birth” was “invariably outing trans people.”
Tara Burke, a CVS spokesperson said they “crafted” the question on its website based on feedback from the LGBTQ community and ensures it is in compliance with CDC requirements.
“An individual’s sex, gender, race or ethnicity are in no way limiting factors in scheduling a vaccine appointment,” Burke noted.
An alternate approach
When Will Love made their way into Brookfield’s vaccine clinic at St Joseph Catholic Academy, they became one of the 3,000 residents whose gender is now marked as “unknown” by the state. The Danbury resident who identifies as nonbinary selected “Decline to specify” under the gender option, and received their shot.
“Usually in those instances, I select ‘Prefer Not to Answer’ just because I don’t feel like it is an accurate representation,” said Love.
Love suggested that providers at least provide three options: male, female, transgender.
“I always get really excited when I have an option to select transgender,” Love said. “If I see nonbinary that is even more exciting.”
But some scholars say the answer is not just adding transgender or nonbinary options along with the others.
Herman said that when given the option of male, female, or transgender, 70 percent will often simply choose the gender they identify as, instead of selecting “transgender.” And already, studies show that surveys could be missing over half of transgender respondents based on the way they ask the gender question.
“A single question won’t do it,” Herman said. “We would recommend a two-step approach if possible.”
In her opinion, that means asking about gender and separately asking whether a person identifies as transgender.
On the other hand, Tierney thinks that asking people to identify themselves as transgender in an unfamiliar health care setting at vaccine clinics could cause anxiety and be a deterrent. Tierney suggested post-vaccine surveys instead.
But at the end of the day, it comes down to inclusion.
“By acknowledging someone’s pronouns or the fact they have transitioned, you are acknowledging them,” Love said.