Insane waiting times and traumatizing visits. Why trans healthcare still needs work in New Jersey.

Nathan Rodriguez lives two hours from his primary care doctor in Somerset County. Although he has to take a full day off work to make the four-hour round trip from his home in Atlantic County, Rodriguez, a transgender man, said it’s worth it.

“I go to this practitioner because she knows something about the transgender community,” said Rodriguez, executive director of the Trans Equity Coalition, a nonprofit run entirely by transgender and non-binary people. “She stopped me from taking medications that would negatively affect my hormones, things like that. So I go to someone who knows.”

Accessing health care in the United States can be difficult for the average citizen, but it’s even more difficult for transgender and non-binary patients looking for an outwardly accepting and informed provider, say experienced doctors and scientists working with NJ Advance Media have spoken.

While New Jersey is considered a safe haven for LGBTQ+ health care, the transgender and non-binary population continues to face barriers to even the most basic physical and mental health care, not to mention gender-affirming care. Aside from the challenges everyone faces accessing health care — finding adequate insurance, rising costs, transportation — transgender and non-binary people face knowledge gaps, discrimination, harassment and fear, according to people with first-hand experience faced physical assaults.

The COVID-19 pandemic has exacerbated existing challenges, limited access to gender-specific resources and increased mental health risks, according to a survey from the South Jersey Institute for Population Health. The survey of over 200 transgender and non-binary people living in South Jersey found significant mental health issues: 21% of trans men, 28% of trans women and 58% of non-binary respondents experienced significant depression.

The community also reported high levels of anxiety, and 29% of participants reported that “fear of discrimination from my healthcare provider” was a major barrier to attending medical appointments.

“In the trans and non-binary population, you see barriers to general medical appointments and mental health appointments, but beyond that there is a lack of access to gender-specific providers, a lack of trust in the provider you may already have, and “You don’t feel as comfortable. You can trust your provider,” said Dr. Christina Goodwin, assistant professor of psychiatry at Rowan University Cooper Medical School, who worked on the survey.

“I think the fear comes from not being accepted for who you are – being mistreated by your psychiatrist, being called bad and just not respected,” Goodwin said.

The real or perceived threat of discrimination can prevent transgender people from receiving health care when they need it.

A nationwide survey of 93,329 binary and non-binary transgender people found that many respondents avoided seeking medical care out of fear of discrimination. Nearly one in four respondents to the 2022 U.S. Transgender Survey have not sought medical attention when needed in the past 12 months due to fear of mistreatment.

After several bad experiences at emergency care near his home in South Jersey, Rodriguez said he avoided seeing a doctor because of complications he suffered from a hysterectomy performed out of state.

“I wanted to seem very masculine when I came in and said, ‘Hey, I just had a hysterectomy, I’m having some complications,'” said Rodriguez, who takes testosterone. “I just suffered from it. I have decided that I will not subject myself to this.”

The fear of discrimination is well founded. The U.S. Transgender Survey found that 48% of respondents who had seen a health care provider in the past 12 months said they had had at least one negative experience because of their transgender affiliation, such as during treatment or when a caregiver was present the treatment is physically rough or abusive,

Even if a provider unintentionally uses a deadname, such as calling a transgender person by their birth name instead of their chosen name, or accidentally using the wrong pronoun, it can be hurtful at best and damaging at worst.

“When dead names emerge, when gender mismatches emerge, it creates an immediate environment of lack of safety, of perceived or actual risk of harm,” said Aisling MacDonald, a transgender woman and project manager and trainer at Garden State Equality, the largest LGBTQ+ advocacy and education organization of the state.

“Do I think the provider is going to take my life five minutes into the session?” MacDonald asked. “I do not believe that. But do I immediately feel like this isn’t a place where I can get the care I need, aside from life-saving gender-specific care? Yes.”

People whose gender identity or expression differs from their assigned gender may need to travel several hours to see a healthcare provider who is openly LGBTQ-friendly and trained in best practices.

While New Jersey has LGBTQ+-affirming healthcare providers statewide, the majority of them are concentrated in North Jersey, where the majority of the population and major medical facilities are located, according to Garden State Equality’s Affirming Healthcare Map.

For example, Robert Wood Johnson University Hospital Somerset is one of only two hospitals in New Jersey and one of only a handful in the Northeast that performs “bottom surgery,” a procedure that assigns a person’s sexual organs to their gender identity, according to the website hospital.

“I just had a patient yesterday that we referred there and he lives on the shore,” Dr. Justin Schweitzer, medical director of the Center for LGBTQ+ Health at Cooper University Health Care. “Talk about access to care. There are likely still problems accessing health care in one of the most densely populated states in our country.”

For many doctors, treating transgender patients may be new territory. Nearly one in four transgender adults who responded to the 2015 U.S. Transgender Survey said they needed to educate their doctor about transgender people.

“I applied for a hysterectomy and the person who made the appointment on the phone kept saying, ‘Okay, so your wife,’ and I said, ‘No, that’s for me,'” Jason said Wilkerson, a transgender man and volunteer with Trans Equity Coalition. “She said ‘I’m not in the mood for jokes’ and hung up.”

Wilkerson said he called back to the office and had to explain to another person that “I am a trans man. I have a vagina.”

“They said I’m so sorry, they thought it was a prank call,” Wilkerson said.

The experience can be alienating and frustrating for transgender patients. The 2015 U.S. Transgender Survey found that people who had to tell their doctor about being transgender had significantly higher levels of poor self-rated health and severe psychological distress than those who did not have to tell their doctor.

“It’s pretty obscene as an individual trans person to be asked to teach your provider how to best support you,” said Lucas Manrique, project manager and trainer at Garden State Equality.

All of these obstacles exist in a state that is considered one of the most welcoming states for transgender people. Last year, Gov. Phil Murphy signed an executive order granting gender-affirming protections to adults and minors and banning the extradition to another state of anyone in New Jersey who provides, receives or facilitates gender-affirming health services. The state also has strong anti-discrimination laws that protect sexual orientation and gender identity in various settings such as employment, housing, and public accommodations.

Attorney General Matthew Platkin has sued school districts for adopting policies that he says violate state discrimination laws and endanger gender non-conforming students.

Thirty-two New Jersey hospitals have been named 2024 LGBTQ+ Healthcare Equality Leaders by the Human Rights Campaign Foundation, the third highest in the country.

But transgender people, medical professionals and experts say more can be done to ensure health care is accessible, welcoming and positive for transgender patients. Advocates say this is particularly important given nationwide fears that President-elect Donald Trump could restrict transgender rights.

Schweitzer said health care providers can challenge themselves to go a step further and train more full-time staff on how to provide LGBTQ+-friendly care.

“In the lectures I give, we talk about pronouns and definitions, but I also talk about why this is important. So we’re talking about health disparities and the risk of suicide for trans youth, which is particularly high. We talk about HIV risk and how it is higher in trans women of color,” Schweitzer said. “I see it as a life-saving health measure and not just a pronoun.”

The Trans Equity Coalition also provides training for physicians on how to interact with transgender patients and teaches them how to run an inclusive practice.

“I hope we continue to improve because despite all the work we’ve done, it’s not great,” Rodriguez said.