LGBTQ patient data needed to change public health policy

When it comes to the health and well being of LGBTQ communities, a topic often discussed is SOGI data — sexual orientation and gender identity data — and the lack of it. Advocates are calling for an increase in the collection of SOGI data nationwide to help improve health outcomes for LGBTQ people.

“It’s really important in public policy to have data to be able to guide you as to what your intervention should be,” said Wallace Swan, who edited the new book “Covid-19, the LGBTQIA+ Community, and Public Policy.”  

As part of his research for his book, Swan sent a questionnaire to chief health officers in all 50 states and six territories to see which of them collected SOGI data as related to Covid-19. He couldn’t believe how few affirmative responses he received. 

He found that only eight states gather the data: Oregon, Nevada, Pennsylvania, Rhode Island, Minnesota, California, Massachusetts and Colorado, plus San Francisco and the District of Columbia. 

In the case of a global pandemic such as Covid-19, SOGI data is vital to be able to assess the health needs of the LGBTQ community, many of whom are at increased risk of contracting a severe Covid-19 infection or dying of the disease. The kind of data that’s needed to provide better healthcare for LGBTQ people, Swan said, is basic information such as gender or nonbinary status, sexual orientation, whether the person has had the disease in question, and if so, whether they died or recovered from it. 

“Especially important these days is long-haul COVID,” Swan said. “If you get COVID once, and then you get it the second time, there’s about a 20-30% chance that you will end up with long-haul COVID. So you need to collect data on at least those three categories.”

Other important LGBTQ data points include socioeconomic status and the location of the disease outbreak in a state — whether it’s in urban areas or the countryside. 

Swan wrote another book that compares the ways that SOGI data was collected on Covid-19, mpox and AIDS in the U.S. He found that a lot of SOGI data on AIDS and mpox was collected because of public advocacy initiatives that hastened the process of data acquisition.  

“There wasn’t very much of that going on with COVID,” Swan said. “There was work that was done in the terms of studies — there was a Human Rights Campaign study, there was a National LGBTQ Task Force study, there was an Equality Foundation study. But it turned out to be primarily academic — people writing articles in journals saying, ‘why don’t we have any data about COVID?’ We didn’t have that activist force driving the collection of data on COVID.” 

The reason why most U.S. states don’t collect SOGI data, Swan hypothesizes, is because of the attacks on the LGBTQ community, from legislative attacks and judicial threats to hate speech and violent acts. 

“The reason is because there’s such a reaction from the right wing to the collection of that data,” Swan said.  

When health officials in Minnesota, where Swan lives, began collecting SOGI data when offering an opportunity to sign up to get the Covid-19 vaccine or treatment, it got some press. 

“It ended up in the newspaper with a prominent person essentially saying, ‘elderly people would be shocked by the collection of this data, and they shouldn’t be collecting it,’” Swan said. “That was then responded to the next day by leaders in our LGBT community.”

Swan also framed the importance of SOGI data for addressing Covid-19 infections in terms of existing health disparities in LGBTQ communities versus the cishet population. In his book “The Routledge Handbook of LGBTQIA Administration Policies,” copyright 2019, Swan printed a chart showing some of those very health disparities in LGBTQ communities in Hennepin County, Minnesota. 

The chart shows that 39.7% of LGBTQ people suffer from depression versus 21% in the non-LGBTQ population; 25% of people in the LGBTQ community have unmet mental health needs, compared to 11.5% in the non-LGBTQ population; 25% of people in the LGBTQ community are obese, compared to 21% of non-LGBTQ people; In the LGBTQ community 13.6% of people smoke, versus 7% of non-LGBTQ people; 42.3% of LGBTQ people use alcohol excessively, while the same is true for 28.4% of the general, non-LGBTQ population. 

“These disparities are the kinds of things that make you very vulnerable to COVID,” Swan said. “What we want to do is reach out and deal with the vulnerabilities to reduce the possibility of really serious Covid-19 effects. But you’ve got to know who the people are and where they are.That’s why SOGI data is so important.” 

Swan pointed out that activists in Pennsylvania have done a good job in taking measures to collect SOGI data. His latest book contains a chapter written by Adrian Shanker, former director of the Bradbury-Sullivan LGBT Community Center and editor of two books on LGBTQ health, in which he looks at a year of LGBTQ health activism and efforts to change policy in Pennsylvania during the first year of the Covid-19 pandemic. 

For example, in Pennsylvania, activists prioritized collecting LGBTQ demographic data for Covid-19 infections and contact tracing; providing training on LGBTQ cultural awareness and equity for contact tracers and disease investigators; drafting and implementation of city and state-level sexual health guidance during the pandemic; giving priority to people living with HIV in vaccine distribution plans on a state level, and other efforts. 

There’s also a chapter on the 2020 Pennsylvania LGBTQ Health Needs Assessment, which was administered by Bradbury-Sullivan Center, the Pennsylvania Department of Health and the Research and Evaluation Group at Public Health Management Corporation. Although the PA LGBTQ Health Needs Assessment was first launched in 2015 and is disseminated biannually, during the pandemic in 2020, over 30 LGBTQ organizations came together to encourage participation in the survey. As such, there was more data than ever on different demographics within the LGBTQ community to evaluate healthcare needs, health disparities and roadblocks to care.  

When it comes to the community and dealing with Covid-19, Swan encouraged people to remain vigilant. 

“I want our community to understand what has happened here, which is a really major thing, and it’s still happening,” Swan said. “[Covid-19 ] is the third highest cause of death in the United States, and the guidance right now is that we should be wearing a mask indoors because of the high level of spread of this new variant that we have.”