Continuous Care

Middlesex Health is supporting transgender patients who face additional health concerns during the pandemic

By Jane Latus

We all heard the warning as the COVID-19 pandemic spread across Connecticut and the nation: Don’t let the fear of becoming infected stop you from seeking medical care when you need it. Otherwise, medical experts warned, patients could experience worse health outcomes down the road – especially those with chronic illnesses – and delay could result in preventable deaths of those too worried about the coronavirus to seek emergency care.

The warnings were well-founded. Across the country, emergency room visits have dropped by 40 to 50%, according to the president of the American College of Emergency Physicians, and nearly half of adults responding to a national survey said that they or others in their household had postponed or skipped medical care during the pandemic.

“Nationwide, there has been a significant increase in mortality rates – more deaths than can be attributed to COVID-19,” says a statement from Middlesex Health. “The worry is that people are not seeking emergency care when they feel very sick.” That includes people with symptoms of potentially life-threatening conditions, including heart attack and stroke.

While the cisgender majority stayed away from medical offices and emergency departments because they feared contracting COVID-19 and because elective procedures were delayed, the pandemic has had unique consequences for trans patients, says Transgender Medicine Program Medical Director Kathryn Tierney, MSN, APRN, FNP-BC, FAANP. Obviously, trans people have the same health issues as anyone else, but they have additional medical concerns and needs as well. “It’s our job to make sure these patients have access to the care they require,” Tierney says.

If anyone has expertise in bulldozing barriers to obtaining medical care, it’s the staff at Middlesex Health. Its Transgender Medicine Program isn’t one that waits around for patients to show up; it’s an advocacy bullhorn for attracting and supporting transgender and gender non-conforming patients.

And if ever there was a community that needed medical champions, it’s the trans and non-binary community, for whom the fear of contracting COVID-19 from medical settings may be amplified by their fears and frustrations surrounding their other obstacles to health care.

Fortunately, Middlesex Health’s Transgender Medicine Program is well-versed in encouraging and enabling one of the already most-reluctant communities to seek health care. And during the pandemic, it has ramped up its efforts to make sure transgender and gender non-conforming people get the help they need.

Barriers to Healthcare Access

“It’s always been a challenge to get trans people to access health care,” says Tierney. “We’re looking at people who have huge difficulty accessing health care to begin with, and the barriers keep increasing. Trans people are more likely to have transportation issues, to have financial issues, to be unemployed, and to be food insecure. On top of that, if you’re sick, you wonder, are you going to a place that will treat you well?”

Compounding these issues for trans people, the pandemic has led to job – and thus insurance – loss. “We’ve seen an increase in the number of patients deferring care because of no insurance, and lapses in filling prescriptions,” says Tierney, noting that Middlesex Health follows up on cancelled appointments. “We try to figure out if it’s an insurance issue and try to get them connected, to make sure they get care. When a community is told for years and years that they don’t deserve equal health care, they [patients] often don’t tell you what the issue is.”

In some cases, the pandemic has pushed trans people into high-risk jobs, says Tierney. “It has forced trans people, who already have a very high rate of unemployment, into working jobs that others have left. A lot of patients are definitely working those front-line jobs – grocery stores, restaurants, retail. You’re faced with the choice of not working or putting yourself at risk. Then there’s the double-edged sword of not knowing, if you get sick, whether you can get care.”

And then there are the effects of isolation or being quarantined in risky situations.

“A lot of young people are forced to be home, including from college. A lot are living in places that are anywhere from uncomfortable to dangerous,” says Tierney. “I’m grateful that remote visits have allowed us to continue our continuity of care.”

Middlesex Health is also still seeing patients in person. The health system is again performing gender-affirming surgeries after delaying some due to the pandemic. The deferral was hard on patients, says Tierney. “For many patients, this [surgery] is the culmination of years of work. It can require being out of work for weeks or months. These procedures take a lot of coordination, and to not know when you are going to be able to do it has definitely been a source of anxiety.”

Tierney stresses that all types of care are now available. “I don’t think at this point there’s a reason to delay care. There is always a sufficient workaround. Do not delay and inadvertently worsen your health,” she says.

Fear of Discrimination

As if the pandemic wasn’t enough, the U.S. Department of Health and Human Services (HHS) in June revoked anti-discrimination healthcare and health insurance protections for transgender patients, a change slated to take effect in August. The Monday morning after the Friday announcement, Tierney says, “already I’m getting messages from people worrying about whether they should move up their procedures.”

Connecticut prohibits such discrimination, but the fear is real for those with insurance through the federal government, says Tierney. Out of state, she adds, “the biggest concern is that it’s now allowable to discriminate against trans people.”

Roughly two dozen states, along with an array of health care providers and LGBTQ+ organizations, immediately launched federal lawsuits to forestall this change, asking the U.S. District Court to set aside the regulation and declare it unconstitutional.

In mid-August, a New York federal judge blocked HHS from ending anti-discrimination protections for LGBT patients, citing the U.S. Supreme Court’s recent ruling in the case Bostock vs. Clayton County that discrimination based on sex included both sexual orientation and gender identity. “The Court concludes that the proposed rules are, indeed, contrary to Bostock and, in addition, that HHS did act arbitrarily and capriciously in enacting them,” the NY judge said. Finding that the plaintiffs opposing the new HHS rule have standing to sue, he granted a preliminary injunction blocking the rule from going into effect.

Actual discrimination, not just the fear of it, has all along been the chief obstacle to health care for trans people. A 2015 survey by the National Center for Transgender Equality found that in the previous year, “23% of respondents did not see a doctor when they needed to because of fear of being mistreated as a transgender person.”

That survey also found:

• 33% of those who had seen a health care provider in the prior year “reported having at least one negative experience … related to being transgender, such as verbal harassment, refusal of treatment, or having to teach the health care provider about transgender people to receive appropriate care.”
• 15% reported that a health care provider asked them invasive or unnecessary questions about their transgender status that were not related to the reason for their visit, and
• 13% said that one or more professionals, such as a psychologist, counselor or religious advisor, tried to stop them from being transgender

“The worry of trans people is that they’ll come in with the same symptoms [as other patients], and yet not be treated the same,” says Tierney. This is why Middlesex Health works proactively to spread the word that “we’re available for competent transgender and LGBTQ care.”

“We’re so lucky that Middlesex is willing to be out in the community,” at Pride celebrations, trans health conferences and other events, she adds. “People need to know you are there. There’s a subtle difference between doing a good job and being vocal about it. You see the cultural leadership.”

Providing Quality Care

Middlesex Health’s Transgender Medicine Program has grown since its 2016 inception to now providing care to more than 1,000 patients. The entire staff at Middlesex, from receptionists to administration, is trained to provide comprehensive and respectful care to LGBTQ+ patients.

“The science of transgender medicine is so nascent compared to other health care fields,” says Tierney, explaining that providing appropriate care requires skilled clinicians and well-trained support staff. “We have providers in almost every area, and we can look at trans health from every perspective.”

At Middlesex Health, a Transgender Services Navigator helps patients access a full array of care, including primary care, hormonal therapy, behavioral health services, continence and pelvic health, gender transition surgery, physical rehabilitation, infectious disease testing and treatment, and voice therapy.

The Human Rights Campaign Foundation – the nation’s largest LGBTQ civil rights organization – consistently names Middlesex Health an “LGBTQ Healthcare Equality Leader.” Middlesex Health offers free online support groups for transgender, gender non-conforming or questioning patients, as well as support groups for friends and families. Visit middlesexhealth.org/lgbtq to learn more.