For the past five years, Massachusetts has mandated that insurers provide coverage for medical services related to the health of transgender people, including gender-affirming medical services. But it was not clear how well the mandate was working or whether people were able to access care now that services were covered. Were insurers covering the right services? What barriers were being encountered?

Harvard Pilgrim Health Care Foundation’s new program, the Health Equity Roundtable, set out to find answers to these questions by bringing together transgender men, transgender women, and transgender youth, along with parents, advocates, and clinicians to discuss the issues patients encounter in trying to access high-quality health services. Hosted by a well regarded local health center as a neutral convener, the roundtable drew a diverse group of transgender stakeholders who were eager to share their experiences about health care and health coverage. Thirty-three people participated in this first session, as well as two Harvard Pilgrim executives.

What we discovered are numerous areas in which the health care system in Greater Boston fails the needs of transgender individuals. The findings are highlighted in Harvard Pilgrim Health Care Foundation’s new report on Transgender Health Care in Greater Boston.

Shortage Of Providers

The report identified a serious shortage of providers who can sensitively and competently provide care—even routine care, such as annual physicals or gynecological care—to transgender patients. All participants felt that health care professionals lacked even basic knowledge about trans health issues, and clinicians themselves reported a lack of training related to trans health across all professional disciplines.

It was often difficult for patients to get referrals to health care and mental health professionals competent to provide care, and even with referrals, patients reported that there were not enough skilled providers to provide care. Good primary care was not easy to find, even for patients who did not require medical services related to trans health. Many otherwise capable medical practices were not comfortable with or competent in providing care for trans patients, participants said.

Long Waits

Participants described long wait times to access doctors and other clinicians with experience in caring for transgender people. This issue was especially problematic for transgender children, who must begin puberty-blocking drugs within a few months of achieving certain growth milestones. With the wait to see a competent pediatric endocrinologist being potentially longer than a year, the inability to access care in a timely manner can have lifelong negative effects on the patient.

Difficult-To-Understand Coverage

Participants said it was often difficult and confusing to learn what was and was not covered by a particular insurance plan. Since services related to gender cross several medical specialties, information from insurers might be scattered and difficult to find. Getting approvals for care was often difficult, and it was not always clear when approvals were needed or from whom.

Accessing Quality Care

For parents, there were a number of issues that made getting care for their children difficult, including the fact that there were very few pediatric endocrinologists who were competent to provide assessments and care for children and adolescents. Some parents reported encountering clinicians who exhibited a lack of knowledge about gender in developing children. Bias and prejudice also emerged as powerful themes that could create an often hostile and anxiety-producing climate in the health care setting. Participants said they felt especially vulnerable in emergency rooms, which led to patients avoiding seeking care when needed. Transgender patients who were part of a racial or ethnic minority were seen as being at a significant disadvantage due to factors including racism, poverty, language barriers, and lack of social support.

Out-Of-Network Coverage

The report also found that there is a wide variation in health insurance coverage for transgender care and in how out-of-network coverage is managed. Out-of-network coverage was seen as especially important as currently there are only two surgeons in New England, located at Boston Medical Center, who provide gender-affirming genital surgical services, and currently those services are only available for transgender women (individuals transitioning from male to female.)

Need For More Robust Research And Training

Both providers and patients felt that there needed to be a great deal more training for health care professionals to improve the competency of services being provided. That training needs to begin in schools that train medical providers of all disciplines, participants agreed. Research also needs to be strengthened, to learn about specific health challenges that might emerge as transgender people age. For instance: What are the recommendations for treating cardiac disease for someone on long-term hormone therapy? What are the risks and benefits of different hormone dosing levels? What particular health issues can we expect to affect an aging trans person?

Rigid Diagnostic Coding

Lastly, the health care system’s dependence on binary coding in patient systems (that is, “Female” or “Male”) creates problems for people, especially when needed care does not line up neatly with clinical decision screens. For example, participants cited difficulty getting approved for pap tests or contraception if their gender marker was male in their medical record, a common problem for trans men who may not have opted for surgery. The lack of more flexible gender options also limits insurers’ and providers’ ability to track quality indicators, such as recommended screenings, clinician participants noted. Were trans men and women getting periodic screening at the same rates as other patients?

Seeking Positive Change For Transgender Patients

While other reports have explored access to coverage and bias in the health care available to transgender people, this is the first report that explores some of the “nuts and bolts” of providing care once access to health insurance is assured. In general, participants in the roundtable flagged training for providers both in school and afterwards, making coverage information clear and easy to find, removing barriers to getting referrals and timely appointments, and using dedicated care managers as important to improving the health care experience for transgendered people and their families. The report makes a number of recommendations for clinical services and insurers.

Harvard Pilgrim launched this Health Equity Roundtable program to help the organization and, more broadly, the health care industry tackle some of the important health disparities of our day. By coming together and talking face-to-face in a safe environment, we were able to ask questions and gather information from those individuals most directly impacted. We hope that by sharing this information with other health care professionals, we can begin to get a better understanding of the issues facing transgender patients, create positive change, and approach health equity for all.