Overcoming Barriers to Care: Breast Cancer and the Lesbian Community

Regardless of age, race, gender or sexual orientation, breast cancer can be a daunting experience; however, for lesbian, bisexual and transgendered individuals, special circumstances and concerns may impede access to breast cancer diagnosis and treatment.

Due to the efforts of organizations such as the Mautner Project in Washington, D.C., Chicago-based Lesbian Community Cancer Project (LCCP) and Breast Cancer Network of Strength, things are beginning to change. Yet, unfortunately, one of the primary barriers to health care within the lesbian community is actual or feared discrimination.

“One of the things that we’ve found in our research is that discrimination, or fear of being discriminated against or ‘outed,’ keeps lesbians from getting medical care,” says Kathleen DeBold, executive director of the Mautner Project. Moreover, the reaction or behavior of a doctor’s office staff has a lot to do with how comfortable people feel in a medical setting. “We have documented cases of negative comments during intake or treatments,” DeBold adds.

The belief that certain screening measures may not be necessary, and thus are not sought, is often a complicating factor. “As lesbians, we might not think that we have the same risks that other women have, so there is the early detection piece,” explains Catherine Jefcoat, director of development and communications for the LCCP. “At the same time, you’re facing medical systems that do not understand you; you don’t see yourself or your life reflected in that system, so you think of not even accessing [it] to begin with,” she adds.

Another key aspect, Jefcoat points out, is that lesbian women who feel marginalized receive mixed messages: negative messages that serve to foster feelings of low self-esteem and, on the flip side, encouraging missives that they should be taking care of themselves. “Unfortunately, those negative messages seep through and women don’t always seek the health care assessments that they should,” says Jefcoat.

DeBold also states that the reasons why heterosexual women visit their gynecologists—sexually transmitted disease concerns, birth control, infertility issues, among others—are not perceived to be as pertinent for lesbian women, so lesbians may not receive checkups or clinical breast examinations as regularly. Moreover, lesbians who are estranged from family members may not have access to family or genetic history.

Both DeBold and Jefcoat agree that economic barriers and lack of medical insurance are obstacles to breast cancer care and health care in general. “Women generally have two main ways of getting health insurance: through jobs and marriage—and lesbians can’t get married,” DeBold says. “Even though we’ve made advances, a lot of workplaces don’t allow domestic partnership coverage.” And even if they do, she adds, lesbians may be afraid to take advantage of coverage because it may expose their sexual orientation to colleagues. According to DeBold, existing research shows that lesbians earn lower salaries and have less earning potential than heterosexual women.

Thankfully, strides are being made to overcome these barriers. In addition to the Mautner Project’s research, outreach, advocacy and direct service support programs, DeBold also credits the “openness” of partners like Y-ME and “the greater visibility of lesbians in the mainstream.” For example, Singer Melissa Etheridge made it easier to use the words ‘lesbian’ and ‘cancer’ in the same sentence. Within the health care system, DeBold notes that there is growing acceptance from health care providers in terms of alternative support systems. She says, “Whoever is part of your support system is welcome. Straight and lesbian women are able to bring friends. The caregiver group is not just made up of a spouse; it is sisters and friends and coworkers.”

Both the Mautner Project and LCCP have implemented training programs to foster cultural and gender sensitivity and, in Jefcoat’s words, “to get the lesbian experience of cancer integrated into the larger cancer world.” Says DeBold, “Health care providers want to help people. If we break through ignorance, we can provide better health care for everyone.”

Additional resources:
The Mautner Project for Lesbians with Cancer provides information and support for lesbians with cancer, their partners and caregivers.

The Lesbian Community Cancer Project (LCCP) advances the health and quality of life for lesbian, bisexual and transgender women through advocacy and public education.

 

This article was first printed in the fall 2006 issue of Lifeline.

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