The single biggest risk factor for developing cancer is age and older LGBTQ people are more likely to be living alone when cancer strikes, without either a partner or children for support. And while we might wish that a lifetime of family rejection would be reversed upon hearing of a cancer diagnosis, sadly that is not always the case.
So who is taking care of our community's older cancer survivors? Having support (or not) through cancer can be the difference between survival and death. One study found that socially isolated women were 34% more likely to die from breast cancer than women with broader social networks. Legally married people are also more likely to survive cancer than those who aren't. Given that LGBT people are still struggling for comprehensive, national marriage recognition, this puts many more of us at risk for poorer outcomes due to isolation and lack of legal protections.
My organization, the National LGBT Cancer Network, found that LGBTQ cancer survivors cobbled together support teams that differ from the mainstream ones. We rely primarily on friends for help, even more than partners if we have them, but survivors also listed their ex-lovers, therapists, friends and colleagues as being there for them. But try as they might, these informal networks are not always able to do enough.
We responded to this concern by obtaining funding from the New York State Department of Health to offer free, online, professionally-led support groups for LGBT cancer survivors, and these groups have been a lifeline for many of the people who have participated. As one older survivor wrote, "I'm always the sole lesbian [in my other support groups]. I'm just more comfortable in an LGBT setting." Another woman wrote in response to a member's painful post about her social isolation as a lesbian, "I don't know the 'right' words to say to help ease your pain, just that I care. I care about how you feel, what you're going through and how you're doing day by day." For older LGBT survivors who are socially or geographically isolated or too ill to leave the house, these words from understanding community members can make a huge difference. The support group often becomes part of their "family of choice".
Our older LGBT cancer survivors cannot rely on small nonprofits like mine to fill in all the gaps that elders experience once diagnosed with cancer. Employment discrimination or residence in a state that does not recognize an LGBT couple's marriage may mean that health insurance is out of reach, limiting treatment options. And, a shortage of culturally competent providers who are knowledgeable of and sensitive to the needs of LGBT patients makes LGBT elders wary of seeking treatment. Many LGBT patients report that, after decades of being out, they returned to the closet for cancer treatment, afraid that disclosing their sexual orientation and/or gender identities to homophobic, biphobic and/or transphobic providers might alienate the doctors and compromise their survival. This, however, has its own price, as we now know that those who withhold this information later report poorer health following treatment than those who were out.
It is imperative that we get strong and significant change from the top. Although the White House is hosting their once-per-decade Conference on Aging next month and they received input from LGBTQ organizations throughout the conference planning process, their online materials and policy briefs make no mention of our community. The opening line on the government website states, "The face of America is growing older and more diverse," but the complete absence of LGBT references, images and issues suggests we are as invisible to the federal government in our aging today as we were when we were younger. This is both terribly disappointing and dangerous to the health of LGBT elders.
Programs and services that specifically address the unique needs of older LGBT cancer survivors are vital to our survival, and the White House aging policy must include funding for these types of programs if our country truly wants to recognize and meet the needs of our communities. SAGE and the Diverse Elders Coalition do incredible work to amplify the voices of our LGBT elders, although their focus is not exclusively on cancer. For our part, the National LGBT Cancer Network has developed an LGBTQ cultural competency training program for health and social services providers, and we travel the country, educating providers at all levels in all states. We also have a wealth of cancer-related resources on our website to promote healthy aging in our LGBT communities. But our community's oldest and frailest cancer survivors need and deserve more, much more.
Please, share information about the National LGBT Cancer Network's LGBT cancer support groups with your friends, family and community members. And we urge you to tell the White House that we must be counted, we must be supported. Only with strong leadership can we address this crisis.