As a high school student in the 1960s, Susan DiPronio had an early encounter with a doctor, and it wasn’t pretty. She’d become so upset during class regarding a youthful crush on another girl that the school called her mother to come get Susan, and to bring her back after a doctor pronounced her “cured.” During a session, DiPronio was open with the psychiatrist: “I told him why I was so upset and about my gay feelings, and he discounted them,” she says. DiPronio’s mother advised her to “tell him what he needs to hear” so she could get a clean bill of health and resume classes. DiPronio, who identifies as lesbian and genderqueer, says she rarely went to see doctors as a young adult, “because it didn’t make sense to me to not be who I was.” But when diagnosed with breast cancer about 13 years ago — with a strong family history, her risk was high — she had no choice.
Since then, large strides have been made in the awareness and health care of lesbian, gay, bisexual and transgender patients, although serious gaps exist. Still, many Americans lack access to LGBT-focused health care. You deserve respectful, competent and equal care, regardless of your sexual identity. That means feeling included when you walk into a facility and free to be open about every aspect of your physical, sexual and mental health with informed, accepting providers.
Partners Permitted?
Living Beyond Breast Cancer, an advocacy and support organization, recently published a guide tailored to LGB patients seeking quality breast cancer care. (Transgender patients may have unique health issues, the guide notes, related to hormone and other treatments.) Sensitive issues are explored, like the pros and cons of coming out to doctors and nurse, along with a slew of resources and tips for finding LGBT-friendly providers — whose waiting rooms may display LGBT-friendly health brochures and posters, or signs or stickers with rainbows or the phrase “safe space” to show patients they’re welcome. Partners must be welcomed too, says Jean Sachs, CEO of Living Beyond Breast Cancer. “When you’re diagnosed with breast cancer, there are a lot of decisions that you have to make pretty quickly,” she says. “It’s a time where you really want to be surrounded by people you trust.”
DiPronio, now a job coach in Philadelphia, recalls a cancer-center experience: “At the time I was diagnosed, I had a partner, and they were very welcoming to her,” she says. But when a bad reaction to chemo put DiPronio in the intensive care unit, system rules kicked in. “They made my partner leave the room because she wasn’t immediate family,” DiPronio says. Distraught, she contacted her oncologist in the middle of the night. The next morning as she recovered, she found her partner at her side.
A federal mandate requires hospitals to tell patients about the right to have visitors of their choice, and makes it illegal to discriminate against visitors based on gender identity.
Wary? No Wonder
Cultural competence for LGBT patients starts with the people sitting at the health facility’s front desk, says Dr. Jesse Joad, president-elect of GLMA: Health Professionals Advancing LGBT Equality. “When somebody has a spouse and the spouse is the same sex, that should be a seamless part of the intake that they’re doing. Calling people by their chosen name, calling them by their chosen pronoun.”
Joad points to a 2009 survey of LGBT people conducted by Lambda Legal. Of nearly 5,000 respondents, more than half had experienced health care discrimination. Bias included patients being refused needed care and health professionals refusing to touch them.
Past encounters can harm future health. Lesbians are less likely to get screening mammograms, although they have more risk factors for breast cancer, such as higher rates of obesity and smoking, and less likelihood of having been pregnant, says Joad, who is also a professor of pediatrics and associate dean for diversity and faculty life emirata at University of California–Davis School of Medicine. “They’re not going to see the health care system because of how they may be treated,” Joad says. GLMA’s online provider directory helps you locate LGBT-friendly health professionals where you live.
Transgender Gap
In the 2009 survey, transgender or gender-nonconforming respondents were most likely to report health care bias. Transgender patients are likely have the hardest time finding appropriate care as well. “Most physicians don’t know how to take care of transgender patients,” Joad says. “There are specific things to do with transition that do take some medical knowledge. Certainly it’s not taught in medical school.”
Part of the solution lies in preparing new medical students to take care of LGBT patients. “They’re just really ready, willing and hungry to do it,” Joad says.
Young and LGBTQ
In June, the Youth Pride Clinic at Children’s National Health Center opened its doors in the District of Columbia for adolescent and young adult patients who are LGBTQ (the “Q” is for “Questioning”). Adolescence is a time for development, and sorting out your sexuality is a developmental process — such as coming to terms with the fact that you may be lesbian, gay, bisexual or transgender, says Dr. Lawrence D’Angelo, director of the new clinic and division chief of adolescent and young adult medicine for Children’s National Health System.
Health providers can help “with great patience,” he says. “Because we don’t want to assume that a person is going to continue the developmental process and feel the same way about themselves and about their sexuality in two or three years that they feel currently.”
In most states, young people age 13 and older can receive confidential care for sexually transmitted diseases, pregnancy and sexual and psychological issues, D’Angelo notes. “I would make sure they’re asking their provider, ‘Is my care around sensitive issues confidential?'” he says. “If the answer comes back, ‘No, I have to talk to your parents,’ it’s time to look for another provider or a different place to get care.”
You may want your parents to be aware of what you’re going through, or you may feel they’re not ready to handle it or you’re not ready to tell them. D’Angelo says at his clinic, providers make the offer to speak with parents, which the patients can accept or not.
Straight Talk for LGBT Patients
About one-and-a-half years ago, Children’s National put together cultural competency training for staff at all levels, D’Angelo says. “One of the things we try to teach our providers is don’t presume. Make sure that your questioning is open-ended. Make sure you give people the idea that you expect that people are going to have differences in terms of sexual orientation.”
An example of open-ended questioning, he says, is “‘Are you having sexual contact with other individuals that involves the exchange of body fluids?’ If the answer comes back ‘Yes,’ we say, ‘How many partners have you had in the past six months? How many partners have you had in the past year?’ And then, ‘Are your partners men, women or both?'”
Some non-LGBT patients might be offended — and that’s a learning opportunity, D’Angelo says. “My immediate answer is, ‘This is a practice that doesn’t judge people. This is a practice that’s open to everyone. This is a practice that wants people to feel comfortable, regardless of who they are. And if you’re straight, we want you to feel comfortable with who you are.'”
Musts to Discuss
The next time you visit your health care provider, bring along a top 10 list of issues you should discuss together. Created by GLMA, each list targets a specific sexual orientation and addresses higher health risks faced by LGBT people.
For lesbians, items to ask about include gynecological cancer and regular pelvic exams. Gay men should discuss safe sex with providers, along with the need for immediate treatment after HIV exposure to prevent the virus from spreading throughout the body. Bisexual patients are advised to remind providers about current partners, which may affect the screening tests they offer. Transgender patients should ask about hormone treatments, heart health and other concerns. Psychological well-being is an important topic for LGBT patients, who are at higher risk for a number of mental health issues, including substance abuse and suicide.
Patient Power
When it comes to health care, DiPronio says, “I’m always looking for someone who’s open to listening to me. I have a few doctors who have not been so welcoming, and I’ve just moved on. I don’t want to ever have to go back in the closet.” She continues, “I’m also at the point where, for many years, I’ve been a champion for my own health care. I’m not going to stop or not say, ‘I’m queer,’ or not say, ‘I want the best care possible.’ I’m very aggressive when it comes to my health care, my friends’ health care and [that of] the people I love.”
More from U.S. News
10 Lessons From Empowered Patients
How to Be a Good Patient Wingman
LGBT Health Care: What to Consider originally appeared on usnews.com