Massachusetts prides itself on being a medical mecca, but transgender people say they regularly encounter ignorance, discrimination, and even hostility in the doctor’s office.
Mason Dunn, a 31-year-old transgender man, painfully recalls being turned away from a specialist’s practice. While he has transitioned to male, he still requires routine pap smears and other gynecological care.
“They told me they don’t serve my needs,’’ Dunn said. “It was really hard.’’
Dunn participated in a 2016 panel investigating transgender health care in Massachusetts, the results of which will be released this week.
Another participant said he went to a hospital emergency room for an asthma attack. But once in the exam room, the doctor called in colleagues to “take a look at this.’’ Another patient was mortified to hear a registration clerk “loudly insisting that I had to be either male or female, so which one was it.” The person walked out.
These experiences are described in the first report from The Health Equity Roundtable, run by the foundation of Harvard Pilgrim Health Care, a large New England health insurer. The program is intended to help the health care industry tackle health disparities by soliciting input from individuals directly affected.
An analysis last year from The Williams Institute at UCLA School of Law estimated that about 1.4 million American adults identify as transgender. That same report put the Massachusetts transgender population at about 30,000 adults. These estimates are far higher than previous ones, and medical providers are just beginning to recognize this group’s huge unmet needs.
Of the 35 people who participated in the Roundtable, 19 identified as transgender and nine said they have a transgender family member. The group also included doctors.
Participants said medical professionals often lack even basic knowledge about transgender health issues, and caregivers on the panel reported a widespread lack of training.
Dunn, executive director of the Massachusetts Transgender Political Coalition, said there are a handful of medical providers that specialize in caring for transgender patients, including Fenway Health and Children’s Hospital. And many colleges are bringing in trainers to improve campus health services.
But wait lists can be long for appointments with experienced providers, some of whom have closed their practices to new patients. And outside of Boston, such providers are few and far between. Children wait up to two years for appointments with pediatric endocrinologists who treat transgender patients. The delay can be problematic because drugs that block puberty milestones, such as the development of breasts or an Adam’s apple, must be timed to the child’s physical development, the Roundtable report said.
Seeking care from non-experienced providers can be worse, however, as they might lack both medical and cultural competency. Emergency rooms are particularly frightening, given the large number of caregivers and other patients who might never have had contact with a transgender person.
Grace Sterling Stowell, executive director of the Boston Alliance of Gay, Lesbian, Bisexual, Transgender Youth, said she has a fear of ending up in an emergency room unconscious and unable to advocate for herself — a common worry among transgender people. “Am I going to get care? Or are they going to say, ‘Leave that person to last. They are a freak.’ ’’
Dr. Joyce Rosenfeld, an emergency physician who works at HealthAlliance Hospital in Leominster, said transgender patients often try to avoid the health care system because they fear hostility and a loss of privacy. “Because they have tried not to access care, they are sicker than the average patient. What started out as a little cold can turn into something so much worse,’’ she said.
The problems start right at the registration desk, where staff might refer to a patient by the wrong gender. The newest electronic medical records allow choices such as male-to-female rather than just male or female on their drop-down menus, Rosenfeld said, but many hospitals cannot afford those systems.
The Massachusetts Medical Society, which represents the state’s physicians, is working to increase training of its members, said Dr. Marian Craighill, head of the committee on transgender issues. The organization recently set aside $48,000 for grants, one of which went to Lawrence General Hospital — whose patients don’t have easy access to Fenway Health — to train residents on caring for the transgender population. These doctors-in-training can then spread their knowledge to other institutions and practices when they get jobs.
The Massachusetts Health and Hospital Association said it held two training sessions last year on caring for transgender patients.
The panelists also cited wide variation in insurance coverage. Only two surgeons in Massachusetts, both in a new program at Boston Medical Center, provide male-to-female genital surgery. No doctors in the state are believed to provide the more complex female-to-male genital surgery. Some people travel out-of-state for either surgery, which might not be covered because the provider is considered out-of-network.
Transgender people face large costs for specialty care. Breast removal is generally covered by insurance as a mastectomy, but ancillary procedures that are considered cosmetic, such as chest contouring, are not. Out-of-pocket fees for cosmetic chest surgery can run $2,000 to $3,000, according to a doctor who participated in the panel. Some surgeons require “chest binders” and electrolysis as a prerequisite for surgery. Yet those are not covered.
The group recommends a host of changes to improve care for transgender people. They want provider networks to list “transgender competent” providers, and ensure that they can provide good referrals for more specialized care. Clinical staff should be educated about transgender health, including that patients might give a different name at an appointment than is listed on their driver’s license or other official documents.
The panel recommends that hospitals educate emergency room staff, including temporary physicians and nurses, on basic care for transgender patients, and consider disciplinary action when poor treatment or refusal of care is documented. They also want insurers to expand coverage for medical equipment, electrolysis, and types of hormone therapy including patches, gels, and creams.
“Just being comfortable dealing with the health care system is a gap for many transgender people,’’ said Mark Mettler, whose 23-year-old daughter is transgender.