A Who's Who of lesbian health gathered in Washington, D.C. Sept. 21-23 for Healing Works: The First National Conference on Lesbians and Cancer. It was organized by The Mautner Project for lesbians with cancer in celebration of its tenth anniversary. More than 250 people attended the confab.
The Mautner Project sprang from "a few pages of notes" on lesbians and cancer written by Mary-Helen Mautner just before she died of that disease, said Susan Hester her partner and founder of the Project.
It is a true grassroots organization that grew out of providing local direct services and "support for lesbians with cancer, their partners, their families and care givers, because risk reduction, early detection and proper care greatly affects the outcome, survival rate and quality of life," explained executive director Kathleen DeBold.
It continues to provide those local services while adding a national effort to educate government officials and healthcare providers "to break down the barriers" that keep lesbian, bisexual and transgendered women from getting the healthcare that they need and deserve. And it helps lesbians understand their rights as healthcare consumers.
CALL FOR REVOLUTION
"Webster's defines revolution as a radical change in a situation. And Lord knows, we need a radical change in the situation of health care in this country," said keynote speaker Marilyn Gaston, MD. She is Assistant Surgeon General with the U.S. Public Health Service and only the second African-American woman to achieve the rank of Rear Admiral in that service.
"We need a radical change in the access to quality healthcare" and "the disparities because of where you live, who you love, how you live." While data is spotty, what exists "shows that lesbians far outnumber other women in terms of not being insured," said Gaston.
"We spend $1.3 trillion on healthcare in this country, and 45 million are uninsured. Doesn't that boggle your mind?" She called for universal for healthcare coverage.
Gaston focused on homophobia as a significant impediment to healthcare. A survey by the Gay and Lesbian Medical Association revealed that 70 percent of their members had witnessed a lower standard of care given to lesbians. Gaston found that "startling."
A survey of physicians found 40 percent of them admitting to being uncomfortable with and having difficulty caring for GLBT patients. So it is no surprise that lesbians and gays often are reluctant to inform their physician of their sexual orientation. And when they do, those physicians often do not understand the special healthcare needs of GLBT patients.
"We are losing Black women [ to breast cancer ] at a rate 2-1Ž2 times [ that of white women ] because we are getting diagnosed at a later stage, and it is more progressed." Gaston "bet it is very similar with lesbian women," but we do not have the data. Some research has concluded that lesbians have higher risk factors for developing breast cancer and lower access to care.
Gaston spoke movingly of her own experience as a survivor of breast cancer. As a physician, she certainly was medically knowledgeable. But learning of her diagnosis made her "sad, scared, and mad as hell." She said, "I was not in my role of being the doctor in control" and was "a very needy patient."
She got "a lot of support from my friends," family, and network of those who had experienced a similar bilateral mastectomy identified through the American Cancer Society. "Part of healing is in the relationship that you have while going through it," said Gaston. She described volunteers as being "in a very sacred and blessed space."
Gaston called for consistent, adequate funding for advocacy groups; expanded research; increased public education; and better screening for earlier detection. And again, she said, the system of healthcare must be changed to assure access to quality care for everyone.
FOUNDING MOTHER
Susan Hester, founder and board chair of the Mautner Project, introduced Kate O'Hanlan, MD, as "one of the founding mothers of the lesbian health movement." She is a gynecological-oncology surgeon in California, creator of The Lesbian Health Fund, past president of the Gay and Lesbian Medical Association, and wrote the first gynecological textbook chapter focusing on lesbian issues.
"Lung cancer has eclipsed breast cancer as a killer of women," O'Hanlan said. "We can attribute about 85 percent of lung cancer to the smoking that women do. And we know that lesbians are smoking more." She called for a focus on preventable cancers, "the ones where we can have the biggest bang for our time, effort, and hearts."
"Don't let your friends go out and have those politically correct cigarettes outside near the sign that says they can smoke there." She urged, "Stay with them and make those politically correct cigarettes less enjoyable, because you are going to tough love them into their own health."
Colon cancer is the third most common cancer we get, said O'Hanlan. "The risk factor are primarily obesity and smoking." It is almost preventable with the standards that we have today."
O'Hanlan linked health and healthcare with how society views GLBT people. Children begin to realize their sexual orientation between the ages of 2 and 8. "But, our parents all assume that we are going to be heterosexual. They are misguided and scientific institutions are not telling them any different. That really stinks." She said that parents need to be taught the truth, to "relax and accept" their gender variant children.
"Kids in elementary schools recognize what love, affection, and relationships are. They need to be able to see themselves as adults, because the invisibility of our population is what is killing them. They are not seeing their future being modeled by their parents' generation."
"When you start digging deeper" into the data showing higher rates of depression, suicide, and substance abuse among the GLBT community, "it is because of widespread societal hatred and the chronic stress of hiding in the closet."
America "needs to talk about how we are raising our young boys," she said. "There is an epidemic of hatred from the white man. Why are we not calling this white male violence?"
O'Hanlan pointed to incidents like the shooting at Columbine High School and said, "We are not naming it what it is because it is the dominant group that is doing it. … Homophobia is what needs to be studied and dismantled."
"If the government is so dead set against 'endorsing homosexuality,' how else are we going to help [ youth who are questioning their sexual identity ] if we cannot use those words?" O'Hanlan called homosexuality "a normal variant of human expression that needs to be taught in the high schools and in the elementary schools in an age-appropriate manner."
She lambasted the American Pediatric Association for its reticence on this issue. And she pointed a questioning finger to the firing of Joycelyn Elders as U.S. Surgeon General "by an administration that purports to support us the most."
"We pay more taxes [ than heterosexuals ] because we are excluded from the inheritance tax" benefits that marriage confers. O'Hanlan demanded that some of that tax money be used to study our issues.
"We need to demand that science be translated into government action," she said. "Some of the solution is going to be our political activism. Some of the solution is going to be our support of the agencies that do this work, either with our time or with our money."
Two days later at the closing plenary session, after dozens of panels, presentations, workshops, and discussion groups, Kathleen DeBold said, "This has been one of the most amazing things that I've been involved with." When she asked, "Does anybody think we should do this again?" the room responded with a thunderous yes.
