Yet even though some people are reluctant to divulge such data, research shows clinicians overestimate the number of patients who would refuse to self-report. A 2017 study found that around 80% of clinicians believed patients would hesitate to provide this data, but only 10% of patients said they would refuse to do so.
The Centers for Disease Control and Prevention also said it should be optional for patients to declare their gender identity. Having the ability to self-identify, advocates say, is key. “It’s important that people can identify with themselves just like any other demographic,” said Chris Grasso, associate vice president for IT and data services at the Fenway Institute. “We want to standardize data collection – just like we ask people about their age, race or ethnicity.”
Progress, but still a long way to go
LGBTQ advocates have sounded the alarm bells throughout the pandemic, writing letters to healthcare organizations and the new administration, asking agencies to report on coronavirus tests, results of care and use of the vaccine in their communities.
A few states and jurisdictions have started to make progress: Pennsylvania, Rhode Island, and Washington, DC, collect and report some of this data in their Covid-19 surveillance systems. And in September, the governor of California passed a law requiring health care providers to collect data for all communicable diseases.
But as of March, the California Department of Public Health failed to release its statistics on sexual orientation and gender identity. And other officials, echoing the concerns of those who want to keep their sexuality private, have expressed reluctance to collect this information. For example, Governor Jared Polis of Colorado, who is gay, said in an April 2020 discussion with other elected officials that “there are a lot of people in Colorado who don’t want this information.” .
Despite the lack of data, the CDC notes that LGBTQ people may be more likely to suffer from severe Covid-19 outcomes than heterosexual people, in part due to a higher prevalence of pre-existing conditions, including heart disease , diabetes, asthma, cancer, obesity and smoking.