A recent National LGBT Cancer Center Network report found that LGBT cancer survivors reported struggles with stigma, fear and support in their health care.
The report, put together with the help of the Network for LGBT Health Equity, found that the history and/or fear of discrimination stopped some from coming out to their doctors during treatment and made them more cautious. The majority of those who had come out to their medical team, 58 percent, did so to correct assumptions, with no form or outlet to express their orientation otherwise. Most of those who did come out did not tell the entire medical staff, only the primary care physician and/or surgeon and oncologist.
Their locations often affected how welcome they felt, partly due to legal reasons and how conservative or liberal the region was. Some were uncomfortable or afraid in religious institutions, afraid their care would be inadequate if their doctors found out about their orientation, HRC wrote in the report.
Some said they had experienced discrimination in treatment.
Many LGBT patients also expressed concern about the support they received. They were very reliant on friends, with some having poor relationships with their families because of their orientation. Of the respondents, 77 percent considered their friends part of their emotional support, 62 percent considered partners, 40 percent considered a parent, 40 percent considered siblings, 30 percent considered coworkers, 28 percent other family members, 17 percent other, and 16 percent a former partner.
Just 5 percent had been given information by their doctors about LGBT support groups, and 34 percent were offered support groups but that were not specific. Some also said their support network, including LGBT partners and friends, were not welcome or treated inappropriately.
“Being LGBT can add additional stress to the whole cancer experience: feeling like things can’t be shared in general cancer support groups, misunderstandings among medical providers about roles of family members, existing strains in biological families due to coming out, partner issues during cancer care,” one anonymous respondent said.
The report also brought up issues about lesbian concerns over the “pink” movement and reconstruction in breast cancer and major issues over gender conformity, use of correct pronouns, and medical discussions of options that made sense for the orientation.
The organizations issued recommendations to include LGBT patients in health care, including mandatory staff cultural training, zero-tolerance environments for discrimination, making it clear that LGBT people are welcome (as both patients and support) through signs in the hospital and on the website, partnership with community organizations, and educational materials that are “welcoming” to all orientations.
In the Coachella Valley, an LGBT health survey of our own was conducted this spring. Results are expected by August or September.
Note: An earlier version of this post incorrectly attributed the report to the Human Rights Campaign, which had supported the project and posted about it on its own blog.