Adding to the Data About LGBT Cancer Survivors

by Liz Margolies, LCSW
Director, National LGBT Cancer Network
New York, NY



Adding to the Data About LGBT Cancer Survivors

 After years of complaining about the lack of data on LGBT health disparities and health experiences, The National LGBT Cancer Network finally has an opportunity to conduct our own research study.  You tell us your story and we will tell the world.

My organization focuses on the cancer risks, screening rates and survivorship experiences of LGBT people. Until national cancer surveys and registries begin collecting information about gender identity and sexual orientation, LGBT survivors remain invisible within the wealth of data there. As Scout makes repeatedly clear, without reliable information, we are limited, not only in our knowledge, but in our ability to develop fundable programs that address this population.

In the absence of national studies, LGBT researchers have taken it upon themselves to find out what they can.  These studies are usually small and sometimes the results are contradictory.   We need more studies and larger studies.  Still, we are all extremely grateful to people like Judy Bradford, Ulrike Boehmer and Ilan Meyer for their work that helps us put faces and facts on LGBT health disparities.

My opportunity to join their ranks came via an email last August from a total stranger, a heterosexual nursing professor from California State University San Bernadino who noticed that the “healthcare system was doing a crappy job of addressing LGBT patients.”  She had an opportunity to get a small research grant and wondered if someone from my Network would like to collaborate on a study of LGBT survivors.  I said simply and swiftly, “YES!”.   

I have still never met Dr. Marilyn Smith-Stoner in person, but our survey is up and running and we already have plans to present the results in October at the 5th Conference on The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved in San Diego.  I guess I’ll finally meet her in the hotel room we are going to share.

Our study focuses on the moment of a cancer diagnosis.  We are interested in who was in the room with you, who made up your support team, were you out to your provider and, if so, did that affect your treatment.  We need a large and diverse group of people to take the (short and anonymous) survey, so we can see if there are differences by geography, race, cancer type, gender identity, age, etc.

We have gotten the word out through our Facebook page, twitter, a Huffington Post blog, print ads in LGBT publications and our newsletter.  We are now asking that you push this out as far and wide as YOU can, engaging your own networks.  The more people who take the survey, the more we will learn.

And, if anyone needs a tad more encouragement, participants can enter a raffle to win one of ten $50 gift cards.

If you have gone through the challenge of a cancer diagnosis, please tell us your story.  Good or bad, we need to know.

You can find the survey online here.

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