Opinion: Missing data is making it difficult for the pharmaceutical industry to help LGBTQ+ people
It’s time to start normalizing the collection of sexual orientation, gender identity, and intersex status as standard patient demographic/characteristic data.
Lack of health data on LGBTQ+ people has real-world consequences. A participant in a 2020 report from the National LGBT Cancer Network said: “There are no guidelines for cancers that are more prevalent among Trans women. I had to fight like hell to have an anoscopy, and sure enough we found [precancerous lesions]!”
That same year, the National Academies of Sciences, Engineering, and Medicine issued a hallmark report on the health and well-being of LGBTQ+ people. It found that social and structural stigma has contributed to lower rates of engagement with the health care system (such as preventative screenings), higher rates of uninsurance and under-insurance, higher rates of many risk factors including smoking and obesity, higher rates of some cancers and cardiovascular disease, and higher rates of mental health challenges including depression, anxiety, addiction and suicidality.
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