Ending the Invisibility: 180 Organizations Call for Routine LGBTQI+ Health Data Collection

New York, NY – Over 180 LGBTQI and allied community organizations have signed on to an open letter to health leaders calling for an end to the invisibility of LGBTQI people in health data. Community leaders ask for data collection in health records, research, surveillance, clinical trials and more. They provide sample measures and urge health leaders not to wait further before making LGBTQI health data collection routine.

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The letter particularly calls out the lack of data related to COVID-19 impacts but notes how that builds on a foundation of major data gaps for most disease areas. The signers note the decades-long history of advocacy about ending invisibility for the LGBTQI communities, including how for years ACT-UP rallied around the slogan “Silence = Death”.
“At the same time that we’re tripping over corporate pride merchandise in stores, it’s aggravating to know the health world is forcing us to stay in the closet,” says Dr. Scout, the Executive Director of the National LGBT Cancer Network. “Until we’re allowed to come out on health forms, key information like how many of us get COVID-19 or cancer every year will never be known.”

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“Reliable, nationwide data on sexual orientation, gender identity and intersex status is critical to identify the health, economic status and well-being of communities that are still misunderstood, marginalized, and subjected to discrimination,” says Daniel Bruner, Whitman-Walker’s Senior Director of Policy. “And acknowledging sexual and gender diversity in surveys and questionnaires assures us that we are seen, and respected as full members of the community.” 

The letter was initiated by a group of organizations convening as the National LGBTQI Health Roundtable, including Whitman Walker Institute, The National LGBT Cancer Network, Fenway Health, Howard Brown Health, Callen-Lorde Community Health Center, Center for American Progress, and more. The full text is included below and can be found online at this link: https://cancer-network.org/ending-the-invisibility-organizations-call-for-routine-lgbtqi-data-collection/.  ###The National LGBT Cancer Network works to improve the lives of LGBTQ cancer survivors and those at risk by educating the LGBTQ communities about our increased cancer risks; training health care providers; and advocating for LGBTQ engagement in mainstream cancer organizations. We lead one of eight CDC funded national tobacco and cancer disparity networks and frequently educate about the need for LGBTQI health data collection to effectively monitor cancer disparities. Learn more at cancer-network.org.

The Whitman-Walker Institute is one of the country’s premiere organizations focused on advancing the health and wellbeing of people facing barriers to quality care, particularly LGBTQ people and people living with HIV, through the strategic integration of clinical expertise, research acumen, quality education and policy change. The Institute endeavors to remain grounded in community by seeking feedback and promoting ideas that reflect the lived experiences and identified needs of those we serve. The Institute conducts cutting edge research and engages in evidence-based education and policy advocacy to end the HIV epidemic, eliminate health disparities, and promote wellness and resiliency. Through such work, we empower all persons to live healthy, love openly and achieve equality and inclusion.

For More Information Contact:
Scout, 401-267-8337, [email protected] or
Jewel Addy, 202.204.5531, [email protected]