We Will Not Be Erased: LGBT participation is vital for the All of Us Research Program

Hon. Nancy VanReece

District 8 Nashville and Davidson County Metropolitan Councilmember

@nancyvanreece | @nvr4district8

PRIDEnet’s mission is to catalyze LGBTQ community participation in health research. We want to share Nancy VanReece’s remarks delivered at the All of Us Research Program Launch event in Nashville on May 6, 2018 about why it’s important for our LGBTQ communities to participate. The All of Us Research Program is the first federal study that we’re aware of that explicitly invites LGBTQ people to participate in and contribute to the diversity of the participant sample. View the talk here.

Everyone is somebody different to certain people in your life; you are a mother, an uncle, a brother, a sister, a colleague, a friend, a councilmember… a young person, a senior or an aging baby boomer like me. You know all the demographics you “fit into”.

I am both the first out woman elected to a legislative body in the State of Tennessee, and someone celebrating 30 years with my wife Joan, whom I met a Bible study in Nashville.

Members of the LGBT communities are everywhere, demographically diverse, and represent all segments of society.

However, LGBT people are largely invisible in federal population-based efforts because we are not counted.

Because sexual orientation and gender identity are not collected during the US Census, the precise number of people in the US as well as their age, geographic, race, ethnicity, income, and regional distributions are unknown.

Without these data, national population-based studies such as the National Health and Nutrition Examination Survey, are unable to generate sampling frames. This inadequately accounts the disproportionate geographic distribution of resources.

In 2010, the NIH commissioned the National Academy of Medicine to study this issue.

The consensus committee poignantly stated, “The relative lack of population-based data presents the greatest challenge to describing the health status and health-related needs of LGBT people” They went on to emphasize the need for national research efforts to explicitly include data measures.

The All of Us Research Project does this.

We are an underserved and understudied population that is vulnerable to poor health.

A poll conducted by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health finds that 18 percent of all LGBTQ Americans refrain from seeing a physician for fear of discrimination.

Data collection has slowed under the Trump administration.

In the past 15 months, surveys collecting data on participation in Older Americans Act-funded programs and Administration for Community Living-supported disability services have removed questions pertaining to sexual orientation and gender identity. In the same time span, numerous political maneuvers have sown uncertainty and distrust throughout the LGBT community.

We experience unique health and healthcare disparities including higher rates of smoking, HIV infection, certain cancers, depression, suicide attempts, and delaying access to health care. Infrequent collection of sexual orientation and gender identity data in clinical settings makes performing specific studies challenging.

Healthcare providers receive inadequate training in caring for LGBT patients that often results in mistreatment or discrimination, which deters research participation.

We need to be included and counted in order to learn more about our communities’ health and to address health disparities.

Now is the time to change the future of health in our community. Please consider participating in the All of Us Research Program.

They’ve erased us from the census.

They’ve erased us from federal government websites.

They’ve erased us from crime data.

They’ve erased us from civil rights protections.

With the All of Us Research Program; they can not erase our DNA.

For more information, go to www.joinallofus.org/lgbt

Sources:

NPR “Here It Goes” Coming Out To Your Doctor in Rural America

The Williams Institute

The Center for American Progress

The National Academy of Sciences (formerly IOM) LGBT Health Report