“Lesbian, Gay, Bisexual, Transgender and Queer: Conversations and Care” at the American College of Rheumatology Annual Meeting
The American College of Rheumatology (ACR) is a professional organization committed to improving the care of patients with rheumatic diseases. Every year ARC hosts an annual meeting, with sessions designed to educate rheumatologists and rheumatology health care professionals. At their most recent annual meeting, the ARC hosted a session on the special medical needs and concerns of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) population. This was the first time that LGBTQ issues have ever been discussed at ACR, so I was excited to be able to attend.
The first speaker was Dr. Barbara Snyder, Former Chief of Adolescent Medicine at the Robert Wood Johnson Medical School. She started by sharing a video from the UCSF PRIDE study, which helped launch her discussion on the ways in which homophobia and stigmatization contribute negatively to LGBTQ health outcomes, particularly for youth. Dr. Snyder explained that LGBTQ youth often internalize societal homophobia, which can lead to increases in medical and mental health problems. She emphasized that being a member of a sexual minority is not a risk in itself, but the associated stigma can lead to psychological distress. When seeking healthcare, LGBTQ patients may also be concerned about a perceived lack of confidentiality, fear the reaction of their healthcare provider upon disclosure, or worry about the provider’s assumption of heterosexuality. All of these can create barriers to adequate health care.
Dr. Snyder then went on to educate the health care professionals in the audience about the differences between natal sex, gender identity, gender expression, and sexual orientation. She defined terms such as transgender, gender dysphoria, heterosexual, homosexual, bisexual, pansexual, queer, questioning, transitioning, and more. She emphasized that sexual orientation is not a choice, but rather an intrinsic characteristic of each individual. She also stressed that orientation should not be considered binary, but rather on a more fluid spectrum.
The second part of the session was presented by Caroline Hill, a licensed clinical social worker at the UCSF Benioff Children’s Hospital. Ms. Hill encouraged the health care professionals in the audience to consider the complex relationship between identity, chronic illness, and life experience for LGBTQ patients. She noted that many LGBTQ patients have had negative experiences in healthcare settings. For example, a 2011 study from the National Transgender Center for Equality reported that 19% of respondents had been refused medical care because of their LGBTQ status. These types of experiences, plus lack of provider knowledge about particular LGBTQ health needs, can lead patients to avoid seeking needed care. Ms. Hill pointed out that it only takes one negative experience to alienate someone from healthcare, which is a real problem for individuals with chronic health conditions.
As all healthcare workers will encounter sexual minorities in their practices, Ms. Hill offered a few practical solutions for better meeting the needs of the LGBTQ community. She recommended creating a welcoming clinic environment, such as hanging posters that are neutral or illustrate diversity, posting a non-discrimination statement, or displaying an LGBTQ friendly symbol that conveys acceptance. Even subscribing to a few LGBTQ periodicals or displaying medical brochures relevant to LGBTQ concerns can help patients feel more at ease. Gender-neutral restrooms were also recommended.
To provide an inclusive appointment experience, doctors need to convey sensitivity, support, and concern. Ms. Hill suggested allowing patients to identify their preferred name, gender identity, sexual orientation, and pronouns on relevant documents. She proposed that doctors should stay up to date about LGBTQ health topics and know of some key resources to recommend within their community. Doctors should also emphasize confidentiality, avoid unnecessary questions, and use gender neutral language such as “partner” or “significant other.” Perhaps most importantly, providers should try to avoid making assumptions and thank patients when they share sensitive information.
During the Q&A portion of the session, I took the microphone and asked both presenters what patients should do if they experience insensitivity from their doctors. Unfortunately, neither presenter quite knew how to answer my question at first. After some thought, they recommended that patients be honest – tell your doctor if something offends you, point out if there’s a pronoun/name you prefer, and offer to educate if your doctor isn’t knowledgeable. They also recommended bringing someone to support you at your appointments if you don’t feel comfortable.
After my question, another member of the audience asked how we can encourage institutions (hospitals, medical centers, professional organizations) to take a more welcoming, accepting stance towards LGBTQ patients. The presenters suggested that major institutions need policies and procedures embedded to demonstrate sensitivity, and that employees need to receive diversity training at the macro-level.
If you consider the historical framework, health care providers have come a long way in providing for the needs of the LGBTQ community. Not even that long ago – in 1952 – homosexuality was still listed by the American Psychiatric Association as a “sociopathic personality disturbance.” Throughout the 1950s, many psychiatrists and psychologists tried various “cures” for homosexuality, including rather horrific “treatments” such as hormones, aversive conditioning, lobotomy, castration, and electroshock. It wasn’t even until 2000 that the American Psychiatric Association removed homosexuality as a psychiatric disorder. Luckily, today’s LGBTQ youth are able to see openly gay politicians, teachers, movies stars, athletes, and other role models. This year we also had a U.S. Supreme Court ruling stating that the Constitution guarantees a right to same-sex marriage. Hopefully we can continue advancing on this front.
But when it comes to the particular needs of LGBTQ individuals who live with rheumatic diseases, I think there is still a lot of room for improvement. For starters, attendance at this session was not particularly robust, so perhaps future sessions could be scheduled in a better time slot to encourage more rheumatologists to attend. (Though, to be honest, most of the sessions I attended that discussed patient’s “quality of life” – sexuality, masculinity, advocacy – were quite sparsely attended. So this may be a more general problem.) This session also focused quite heavily on the needs of LGBTQ youth, leaving older generations more or less out of the picture. And while background information on LGBTQ terminology is certainly information that doctors should have, I would have like to have seen more specific suggestions for helping LGBTQ patients manage chronic conditions. Hopefully ACR will continue to improve on this topic at future annual meetings.
This activity is not sanctioned by, nor a part of, the American College of Rheumatology.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?