At No Special Risk for Breast Cancer
By Jean Latz Griffin
Lesbian health has been little studied and greatly misunderstood, according to a long-awaited report by the Institute of Medicine, which concluded that more work is needed to make sure lesbians have access to health care and that the health risks and health benefits of their lives are known.
In what may provide a welcome sigh of relief across lesbian America, the committee stated that it "did not find that lesbians are at higher risk for any particular health problem simply because they have a lesbian sexual orientation."
Specifically, studies to date don't support the fear, which has reached near panic levels over the past several years, that lesbians have a much higher risk of breast cancer than straight women, the report said.
Some risk factors for breast cancer may be more prevalent among lesbians -- such as having fewer children, having children later, drinking, smoking, being overweight and suffering from a great deal of stress -- but there is no conclusive evidence that such risk factors are more prevalent or what impact they have on lesbian health, the report states.
The report was praised by the 2,000-member Gay and Lesbian Medical Association, whose past president, Jocelyn White, M.D., was one of the reviewers of the information to be presented in the report.
"This report is as important for what it doesn't say as for what it does say," said Kim Mills, director of education for the Human Rights Campaign. "It reveals how little is really known about lesbian health issues. We hope it will break down some of the barriers to research and will send a signal to private and public funding sources that this work is needed and valuable."
In a related study, the day before the report on "Lesbian Health: Current Assessment and Directions for the Future," was released, the first study to show that removing healthy breasts can prevent breast cancer was published in the New England Journal of Medicine.
At what was described as a "cruel price," in one report, the study showed that women who feared they were at high risk for breast cancer because of a family history reduced their change of getting breast cancer by 90 percent through what is called bilateral prophylactic mastectomy.
However, because the surgeries were done before genetic testing for the BRCA1 or BRCA2 mutations was available, it is possible that up to half of the women who had their breasts removed were actually at very low risk for the disease, according to an accompanying editorial in the Journal. Women in families with a high incidence of early breast cancer have a 50/50 chance of inheriting the aberrant gene, which is a known risk factor.
The reaction of those working with lesbians facing breast cancer was mixed -- respect for the incredible fear that would prompt such a drastic decision, but a call for a better way to prevent the illness.
"I think the study is wonderful for folks who have made that very difficult decision, to know that they have some reassurance they won't get breast cancer," said Beverly Baker, executive director of the Mautner Project for Lesbians with Cancer. "But in the larger scheme of things, women should not have to get their breasts cut off to protect themselves from getting breast cancer."
The Institute of Medicine report on lesbian health also addressed the need to study the barriers lesbians experience in obtaining health care. These include a lack of "culturally competent providers," in other words, too few doctors who are knowledgeable about and supportive of lesbians; managed care systems that restrict access to lesbian-friendly providers; financial constraints, and a lack of spousal benefits.
The barriers to going to the doctor can range from worry about the possible repercussions of answering sensitive medical questions to an outright fear of homophobia. In addition, there are misperceptions – such as the belief that lesbians don't need Pap smears to check for cervical cancer if they are not having sex with men.
"Lesbians have been mistreated and abused by health care providers, and that's one of the reasons they don't seek medical care," Baker said. "How do you answer all those questions – 'single, married, divorced, on birth control or not, how many children?' Lesbians wonder if the information will be used against them."
To help bring down some of those barriers, Baker's group is working with the federal Centers for Disease Control and Prevention to develop a training program for health centers to help their staff understand the special needs of lesbians. The program is being funded by the National Breast and Cervical Cancer Early Detection Program of the CDC.
Stress and psychological problems, often stemming from "adverse societal attitudes, family rejection and internalized homophobia," may also have an adverse effect on lesbian health, but more research is needed to determine what the effect is and how to deal with it, according to Institute of Medicine report. In addition, research is needed to determine the health benefits of living a lesbian lifestyle.
While recognizing the need for confidentiality, the report called for the inclusion of lesbians in research studies so that more can be learned about the health concerns they share with straight women and how they differ.
Including any women in research studies is a relatively new phenomenon. Until quite recently, nearly all clinical trials were performed on men, with the results extrapolated to women without regard for their different physiology and biochemistry.
In addition, the report called for a better understanding of ways women in different races and cultures define "lesbian." Too many studies, including one that was erroneously used to predict lesbians' increased risk of breast cancer several years ago, only include white, middle class, young to middle-aged, well-educated women.
Studying any of the factors is made more difficult, however, the report said, because people who seek to conduct research on lesbian health often experience personal stigma, have trouble obtaining funding, and if they are graduate students, have difficulty finding mentors. The report calls for increased funding to train researchers in conducting lesbian health studies on the predoctoral and postdoctoral levels.
"It is a disgrace that in 1999, researchers are afraid that their careers will be wrecked by studying lesbian health," said HRC's Mills. "We hope this report will help change those attitudes."
The Institute of Medicine Committee on Lesbian Health Research Priorities was established in 1997 through funding by the National Institutes of Health Office of Research on Women's Health and the Centers for Disease Control and Prevention. This report is the result of the first federal funds allocated to understanding the best method of conducting research on lesbian health, according to the Gay and Lesbian Medical Association.
"This report will play an important role in shaping a sound, strong lesbian health research agenda," said Fred Fox, M.D., GLMA director of public policy. "We have one of the most respected institutions in the country underscoring what the lesbian health movement has been saying for more than a decade: the field of women's health is incomplete unless lesbian health issues are researched and understood."