LGBTQ women have less access to care after cancer treatment compared with heterosexual women, according to a study released earlier this summerfrom the Boston University School of Public Health. But this disparity in care stretches beyond cancer treatment and beyond those identifying as female. Sean Cahill is the director of Health Policy Research at Boston's Fenway Health Institute. He spoke with WGBH Radio’s Mary Blake about why there’s a disparity in the access to health care for LGBTQ people. This transcript has been edited for clarity.
Mary Blake: What percentage of the LGBTQ community is being treated at Fenway Health Institute?
Sean Cahill: So we know from the 2016 Behavioral Risk Factor Surveillance System survey, which our state health department does, that 7.2 percent of the adult population in Massachusetts identifies as LGBT. So we're talking about roughly 7 percent of the population. We at Fenway Health serve about 35,000 patients, and about half are LGBT. About 3,000 are transgender, and maybe 1,000 are gender non-binary.
Blake: The BU School of Public Health report focused on care after cancer treatment. But I would imagine that there is a disparity in care in other diseases?
Cahill: Yes. This is a broader issue that we see with the LGBT community. Members of our community do experience disparities in access to routine preventive care and to emergency care. And this is especially true of lesbian and bisexual women, and transgender people in the community. Lesbian and bisexual women are less likely to get certain kinds of preventive screenings, like pap tests and mammograms. They get diagnosed later and they end up having poorer treatment outcomes.
Blake: The BU study is defining access to care as both fundamental access, like lacking insurance or money to afford co-pays, but also emotional access — stigma and discrimination in the health care system. Are you hearing this directly from patients?
Cahill: Oh, definitely. We hear a lot from patients, and we also see survey data that indicate that LGBT people experience discrimination in health care settings. They experience stigma, sometimes they feel that they're being blamed for the health condition that they have. This can be a barrier to accessing care. In Massachusetts, about 95 percent of LGBT people have health insurance. That's about the same as the rest of the population. So having insurance is necessary, but not necessarily sufficient to have access to care. So another element is, Can you get culturally competent affirming care? So, do you have a provider who treats you with respect, who asks you about the family supports that you have, who doesn't assume that you're heterosexual, doesn't assume that your cisgender — the vast majority of us are cis-gender and a small minority of us are transgender — and who can provide care that is relevant to you as a lesbian or bisexual woman or as a transgender person.
Blake: What can physicians do?
Cahill: Physicians can be affirming. They can ask open-ended questions. They can be humble and not assume things about the people that they're treating. A very important thing that we encourage health care providers to do is to ask their patients about their sexual orientation and gender identity so that we are able to collect a much better data set, because clinical data is actually in many ways more robust than survey data in terms of health outcomes and treatments that people are getting and so on. That can be affirming to the patient, to know that the provider is sophisticated enough to understand that not everybody is cisgender, not everybody's heterosexual.
It can also inform what's called “decision support,” where you offer certain preventive screenings to your patient based on this knowledge. So if you're treating a transgender woman, transgender women have prostate glands, and they should be screened for prostate cancer the same way that I'm screened for prostate cancer. And so even just understanding what the preventive screening needs are for a transgender patient requires you to know that that patient was born a sex which is different from the gender that they identify as now.
I would just say also that we work a lot with health centers around the country and train them in how to provide affirming care and culturally competent care. And it's really important to train all clinical staff so that they can be affirming of patients when they walk in the door. Like, a lot of transgender people use a name that's different from their birth name or given name. They may not have legally changed that. But if you use the nickname field in the electronic health record, you could do that for all patients, because there are other patients who use their middle name or who use a nickname, who don't like the name that they were given but they haven't legally changed it. So that can be affirming for patients beyond LGBT patients. Even something as simple as putting a rainbow flag in the window or on the door, or having posters that show same-sex couples together or that send a message that you're welcoming to LGBT people. That can go a long way toward having people feel comfortable and safe in a health care practice.