HHS LGBT Listening Session Report Out From Cancer Network

Liz Margolies

By: Liz Margolies, L.C.S.W.

Most of the time I have to force people to listen to my opinions on what would fix the cancer health disparities in the LGBT community. So, imagine my delight in being invited to speak my mind to high up officials at The Department of Health and Human Services in Washington DC.  It was worth rising early and dressing nicely, two things I usually grouse about.  I prepared remarks that would best represent the values of CenterLink’s Network for LGBT Health Equity and the National LGBT Cancer Network.

In addition to HHS Secretary, Kathleen Sebelius, the head of the table also held Cathy Greenlee, Ken Choe and Howard Koh, the co-chairs of the LGBT Coordinating Commitee at HHS.  Around the other three sides were representatives of about 20 LGBT health organizations, including GLAMA’s Hector Vargas, HRC’s Shane Snowdon, Fenway’s Sean Cahill and, of course, Scout.  We listened attentively to the Secretary’s report of LGBT accomplishments and wishes, and then we went around the room and said what mattered to us and the people our organizations serve.

I said, “My organization addresses LGBT health disparities across the Cancer continuum, but today I want to focus on survivorship.  We conducted a national survey of LGBT cancer survivors and the level of discrimination they reported in their cancer treatment was shocking and disturbing. Some changed doctors, but many could not, either because their health insurance didn’t allow it or because there were no other treatment options where they lived.  Some people went back into the closet during treatment, fearing that discrimination could compromise their treatment from a life threatening illness.  Some transgender people were denied their hormones while they were in the hospital.  This is terrible because we know for sure  that one’s experience of healthcare has a profound impact on recovery and health.

We need research on LGBT cancer and it needs to be funded by PCORI and NCI.  My quick search found only 13 funded studies!  And another mere 25 studies on tobacco, even as we know that tobacco is the largest preventable cause of cancer!

And one more request: while research shows that LGBT people use tobacco at rates that are 68% higher than the national average, without including gender identity and sexual orientation in the SEER data, we can’t say with certainty that we have even one more case of lung cancer in LGBT people.”

I sat back in my chair. And gave the floor to Scout.



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