Cristina Muldow has had breast cancer twice. She’s had two mastectomies, a round of chemotherapy and reconstruction surgeries.
As a member of the LGBT community, it wasn’t easy for her to find the kind of support she needed, even though it is widely believed in the medical field that her community suffers from higher rates of cancer. So, after her battle with the disease, Muldow took on the role of advocate.
She’s now the program coordinator of the Lesbian Cancer Initiative (LCI) in New York City, which offers a continuum of cancer services to lesbian and bisexual women, and transgender people. The LCI recently held its annual Health and Pleasure Fair at the LGBT Center in the West Village.
“The fair targets those in the community who are less connected to medical care,” Muldow said.
Some members of the LGBT community fear discrimination in health care and won’t seek out help when symptoms emerge.
“I am certain that the cancer rates for lesbian, gay, bisexual and transgender people are substantially higher than for the general population,” said Liz Margolies, the executive director of the National LGBT Cancer Network. “I am convinced. I’ve seen enough indicators, enough small studies confirming our increased risks and enough studies confirming our lower screening rates that there is no question to me. But just having me know it, and running my small organization, there’s only so much noise we can make.”
Margolies said the LGBT community needs to be more aggressive about their health care needs.
“If as a group we have increased risks, we should be hyper-vigilant about cancer screening,” she said. “But instead, what we see in this population is an avoidance of the health care system, and in fact, there’s plenty of studies to show that our rates of mammography, cervical pap smears, and colonoscopies are way below the national average.”
Margolies said that LGBT people smoke and drink at twice the rate than heterosexual people do, increasing the risk of various types of cancers. Lesbians and bisexual women also face more risks because they are less likely to have children or use birth control which also heightens the risk of cancer.
“The reason is that the more periods you go through, the more cycles of hormones coursing through your system, the greater your chance of cancer,” Margolies said. “The same goes for transgender people, who take hormones during the transition process.”
Barbara Warren, the director the LGBT health services initiative at Beth Israel Medical Center, said it is out of fear that people are avoiding doctors’ offices and hospitals.
“They anticipate that they may be treated, at best, tolerantly but not necessarily affirmatively; or at worst, be discriminated against or stigmatized,” Warren said.
Warren was at the health fair representing the hospital with Julie Winslow who screened attendees for cholesterol, glucose and blood pressures.
“Hospitals are recognizing that this is a need, especially Beth Israel, so we are working to make sure people can feel comfortable coming in,” Winslow said.
Warren said Beth Israel is trying to be a model for other large corporations to become LGBT inclusive. But it’s difficult, because research has shown that medical students only get about five hours of sensitivity training on LGBT related issues, and Margolies said that most of it revolves around HIV/AIDS.
“What we see is that even people who are very brave and are out to everybody in their lives think twice about coming out to their oncology health care teams,” Margolies said. “Once they feel like they have a life-threatening illness, it is much riskier to alienate your health care providers.”
Last year, the National LGBT Cancer Network was chosen to train medical professionals in New York City by the Health and Hospitals Corporation. Margolies is optimistic at the progress, but acknowledges that it’s difficult because doctors need to start asking patients about their sexualities.
“If you want to know who these people are, you have to do it,” she said. “And it’s going to feel awkward as you learn a new language and ask these questions for the first time, but we think it’s worth it.”
The need for conversation comes from a lack of options on the initial intake forms that patients fill out when they visit doctors. There are only male and female boxes, leaving transgender people uncomfortable, and the relationship options are single, married, divorced or widowed. So it is frequently up to the patient to let his or her doctor know about serious relationships that, in some states, do not qualify for marriage.
Muldow, who has been cancer free since 2008, said that since she was single while she went through cancer treatment the first time, it was as if her sexuality did not exist.
“It fit into the sort of ‘don’t ask, don’t tell’ way of going about things,” she said.
She would have preferred to have been asked, so she would not have to worry about the doctors’ perceptions of her.
In the meantime, the National LGBT Cancer Network and other organizations are rallying together for progress. Margolies said that in 2013, the National Health Information Survey will start asking questions about lesbian, gay and bisexual people, and that within a year, there will be a lot more information to work with.
Margolies believes that the health care field is on the right track because views toward LGBT people are changing, especially considering what’s happening with marriage equality.
“Ultimately, my long term goal, is that my organization does not need to exist,” Margolies said. “That everybody who is in the health care system understands the unique health risks and needs of LGBT patients, and treats everybody in a warm and welcoming way.”