When you book a Covid-19 test or vaccine appointment in Colorado, you’re almost always given just two choices for selecting your gender: male or female. Few providers list “other,” and there’s rarely if ever an option for nonbinary or transgender. There’s no option to report sexual orientation.
As a result, the state health department hasn’t been collecting basic data that advocates and health experts say is needed to address health disparities among LGBTQ people. And it means the state hasn’t been tracking, or addressing, Covid-19 vaccine hesitancy in the LGBTQ population, a known challenge in a community that has faced discrimination from health care providers.
“If we can’t be seen in the data, systems will never change,” Mardi Moore, the executive director of Out Boulder County, told Boulder Reporting Lab.
This need to be seen is why Out Boulder County led the effort this year to pass a law requiring health care providers to ask patients to voluntarily disclose their sexual orientation, gender identity, disability, race and ethnicity. The organization formed in 1994 in part to organize the annual Boulder County Pride Festival before growing into a statewide LGBTQ advocacy organization.
“We know that when we look at the social determinants of health, the LGBTQ community as a whole is way behind the curve,” Moore said. “And then if you intersect that with race, those numbers are even worse.”
When Gov. Jared Polis signed the bill into law on June 2, Colorado joined about a half-dozen states seeking to collect similar data in an effort to better understand and tackle health inequities. Other states gathering health data on sexual orientation and gender identity include California, Illinois, Pennsylvania, Oregon, Rhode Island, as well as the District of Columbia.
The law had the backing of Boulder’s delegation at the state Capitol, including Rep. Karen McCormick of Longmont and Sen. Sonya Jaquez Lewis of unincorporated Boulder County. Both lawmakers were lead sponsors.
“It is the first bill that Out Boulder, in our 25-plus-year history, has run. And we got it passed,” Moore said. “LGBTQ people needed to be included in vaccine equity.”
Out Boulder County was motivated to act after its June 2021 survey of nearly 300 people found higher rates of suicide attempts and greater demand for mental health services among LGBTQ respondents during the pandemic, compared to non-LGBTQ respondents. It also found higher rates of vaccine hesitancy among LGBTQ people, with cost and safety top concerns. About 43% of the unvaccinated LGBTQ respondents said they do not have a trusted primary care doctor, compared to 0% in the unvaccinated non-LGBTQ group.
Moore and others were initially concerned about whether the Covid-19 vaccine would be safe for people taking medications for HIV, a virus that attacks the body’s immune system. (The Centers for Disease Control and Prevention says the Covid-19 vaccine is safe for people with HIV.)
Hesitancy may stem from a history of medical discrimination against LGBTQ people. Transgender people have reported doctors denying them routine and emergency medical care, in part because they disapprove of their gender identity. Gay men taking medications for HIV have alleged being denied medical insurance.
For reasons like these, sharing information with health care providers has also prompted concern among some LGBTQ people. Even Gov. Jared Polis, Colorado’s first openly gay governor, has said some people may not be comfortable sharing the information. Polis signed the bill on June 2 without a bill-signing ceremony, one day after the start of Pride Month.
The law does not require people to disclose their sexual orientation or gender identity. Instead, it requires health care providers to ask for it. The law calls for the creation of a data advisory working group by November 2022 to begin studying how to collect and aggregate the data. The state is allowed to collect and report demographic data on issues related to mental health, maternal mortality, immunizations and food insecurity.
The new law doesn’t cover data collection on all health issues.
Suicides, for example, are known to be higher among LGBTQ people, but information around a person’s sexual orientation and gender identity is difficult to collect after someone has died.
And more than a year after the vaccine rollout, most vaccine providers have not collected any information about peoples’ sexual orientation or preferred gender identity, leaving the state with lots of missing data.
“When I got my first vaccine, I felt like I was not counted in that data,” said Michal Duffy, Out Boulder County’s director of education and research.
But since Duffy got their first vaccine dose last year, the Colorado Immunization Information System began asking whether people identify as nonbinary or transgender, providing a glimpse into what it might look like to access health care services under the new law.
“Having that validation in a government-recognized document, we wish it didn’t matter, but it really does,” Duffy said. “To be not rendered invisible can be really powerful on a personal level, as well as the larger public health level.”