LGBT cancer survivors’ voices spotlight cracks in health care system

Report makes practical, life-saving recommendations for providers

NEW YORK -- The National LGBT Cancer Network released a new report that uses the direct experiences of cancer survivors to paint a stark picture of the effect of discrimination on LGBT health.

The free, downloadable booklet, “LGBT Patient Centered Outcomes,” uses the findings to suggest practical recommendations for improving health care for LGBT people.

“When we asked cancer survivors to tell us what they wanted health care providers to know, we were saddened, angered and moved by many of their stories; cancer is enough of a burden, no one should have to endure the discrimination, alienation, and, in some cases, less than adequate care because of who they are,” said Liz Margolies, executive director of the National LGBT Cancer Network. “For many of the survey respondents, cancer treatment is both the same, and scarier.”

Quotes from study participants highlight her point:

“I was never out during the whole process to anyone. I had no one in the hospital or doctor visit me for fear of my gayness being discovered and then the doctors ‘accidentally’ not removing all the cancer lesions.”

“… It is important to know where it is safe to bring a partner, because my family hates me and even my mother told me right before the surgery that she hoped I would die in surgery and that she wished I had never been born.”

“As an alone, aging senior, I am also dealing with fear of rejection by being "out" even though I was very "out" when younger and in a partnership.”
“Although my doctor knew all about me, each encounter with new people—with blood draws, ultrasound, breast x-ray, etc.—had the basic anxiety of the procedure and layered on to that, the possibility of homophobia and having to watch out for myself.

“Being a Lesbian facing having your breasts cut off, it would be good if they did not assume you were concerned about how "men" would see you in the future!”

“I believe my perceived orientation allowed my caregivers to give superficial care, and my own latent shame allowed me to accept a quick and incorrect diagnosis of health."

Dr. Scout, a co-author and the director of the Network for LGBT Health Equity at The Fenway Institute noted the direct relevance to the new patient centered care movement. “Data continue to show satisfied patients, that is patients who feel safe and understood during health care, stay healthier. This is why patient-centered care is best. But for LGBT patients, their care often falls short of being patient-centered and sometimes it’s blatantly patient-intolerant,” continued Scout.

“This new report is not about theories, it is based on the lived experiences of people who can teach us about how to make things right for LGBT patients. These stories show us exactly what is needed to improve the climate for LGBT people in all areas of health care, not just cancer care,” Margolies said.

The report highlights recommended suggestions for each section, including some that are newer to the field. “We clearly saw the need to actively monitor LGBT patient satisfaction. This is a new idea, and we’ll be including suggestions on how to do this in all of our cultural competency trainings now,” Margolies.

The report also highlights innovative recommendations about family support and the need to nurture LGBT employees. The biggest recommendations are the pillars of most current LGBT cultural competency trainings: to actively convey welcoming through outreach, policies, environment, and provider trainings. An estimated 50% of the hospitals in the country have now passed LGBT inclusive nondiscrimination, often quietly and without fanfare.

“Passing a policy without promoting it doesn’t create change,” Scout said. “And LGBT people need change in health systems now.”

“These people spoke up about sometimes heart wrenching experiences because they wanted healthcare workers to know how to make care better for others. I hope everyone in healthcare will listen,” concluded Margolies.

The National LGBT Cancer Network works to improve the lives of LGBT cancer survivors and those at risk by: educating the LGBT community about our increased cancer risks and the importance of screening and early detection; training health care providers to offer more culturally-competent, safe and welcoming care; and advocating for LGBT survivors in mainstream cancer organizations, the media and research.

The Network for LGBT Health Equity is a community-driven network of advocates and professionals looking to enhance LGBT health by eliminating tobacco use and other health disparities by linking people and information. The Network is a project of The Fenway Institute in Boston. The Fenway Institute at Fenway Health is an interdisciplinary center for research, training, education and policy development focusing on national and international health issues.

Lgbt Patient Centered Outcomes


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