Lost in Transition
understanding west virginia's transgender health care system
April 27, 2020
Joelle Gates
According to a national study conducted by The Williams Institute in Jan. 2017, West Virginia had the highest population of teens, ages 13 to 17, who identified as transgender, but according to data recently collected by Fairness West Virginia, 70 percent of transgender West Virginians said they have delayed accessing healthcare due to fear of discrimination. Following the collection of this data, Fairness West Virginia sought out to improve the livelihood of trans West Virginians by improving LGBTQ+ education in the state’s healthcare system.
Despite facing obstacles during the beginning of her transition, Natasha Stone, the transgender visibility coordinator for Fairness West Virginia, a statewide civil rights advocacy organization dedicated to the equal treatment of LGBTQ West Virginians, was able to find her way to medical resources, even if it meant chipping in while creating these resources.
As discussions related to transgender individuals begin to grow throughout the state, providing the community an attempt to become normalized, resources related to trans care are also beginning to grow throughout the nation. In West Virginia this process has been slow, providing limited opportunities for trans care.
While the state has historically been bombarded with various health issues over the past decades, the condition of West Virginia’s transgender health care system, or the lack thereof, may be one of the next issues the state must face.
Understanding the Issue
“Before I came on, Fairness West Virginia put out a call out for information about the state of healthcare for trans people in the state of West Virginia and heard a lot of horror stories,” Stone said.
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The collected data set a baseline of insight centered around the experiences that trans West Virginians may face when navigating the state’s healthcare system. Stone said that among the topics researched were experiences of discrimination, necessary travel to receive care and the impact of medical costs.
According to Rebecca Denning, a board certified child and adolescent psychologist, instances of transgender discrimination may be connected to a general misunderstanding of gender nonconforming individuals.
“Historically, training in culturally competent care has not been a standard in many healthcare programs,” Denning said. “We know this adversely impacts care for people of diverse backgrounds.”
For Evan Wiseman, a 21 year old trans man from Parkersburg, West Virginia, the journey to transition brought on many of those obstacles due to a lack of resources and general understanding about transgender individuals.
“Starting in 2014, my parents, eldest sister and I searched all throughout the state looking for hormone therapy before I eventually started. We looked everywhere but eventually accepted the fact that I would have to travel to Cleveland Clinic,” Wiseman said. “All of the primary physicians in Parkersburg weren’t interested in helping me.”
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Due to the lack of resources in the state, trans individuals, such as Wiseman, are often times left to travel out of state in order to receive the care they need. In their surveying, Fairness West Virginia found that 36% of transgender West Virginians traveled out of state to receive care while 46% of transgender West Virginians had to travel more than one hour to receive care.
In addition to a lack of resources, Wiseman said that trans West Virginians may also travel extended distances in order to receive educated, understanding care from medical professionals who are knowledgeable on how to interact with transgender individuals.
In Wiseman’s experience, he said that any time he’s received care from an emergency room be has been treated “extremely poorly.”
“(Doctors) in the ER will use she/her pronouns because my gender is not legally changed and they’ll ask for my dead name even though I list my preferred name,” Wiseman said. “Often times male doctors wont even look me in the eyes and will say the bare minimum to me.”
While recently receiving care for kidney stones at Ruby Memorial Hospital in Morgantown, West Virginia, Wiseman said he felt “violated and not care for” after receiving care from one of the physicians.
“I had a doctor who was using a scope for a vaginal procedure and, before telling me what was going on, he started and procedure,” Wiseman said. “When I made a sound because of the pain, he told his nurses to restrain me and told me to be quiet because its ‘not that bad.’”
While medical professionals may not understand how their actions can be harmful, Denning said that unfavorable medical experiences can have traumatizing effects of trans patients.
“We know that when transgender patients encounter messages that their identity and gender expression are a problem, they are at a significantly increased risk for a range of poor health outcomes,” Denning said. “These experiences actively cause harm.”
In regards to mistreatment in a medical setting, data collected by Fairness West Virginia found that 60% of transgender West Virginians said a health care provider intentionally misgendered them. 20% of transgender West Virginians aid they had been refused care due to their gender identity and 25% of transgender West Virginians said that unrelated health issues were blamed on their gender identity.
Even still, outside of obstacles created by a lack cultural differences and a general lack of understanding, trans individuals may still come into contact with barriers that prevent them from receiving the care that Wiseman deems “life threatening.”
Once Wiseman decided to look into top surgery, a medical procedure which removes breast tissue to produce a masculine appearance, he said that finding the one — and only — trans educated surgeon in the state wasn’t hard, but trying to get the procedure covered by insurance was difficult.
“I was supposed to get surgery heading into my senior year of high school in 2018 but my insurance said they wouldn’t pay for it until I turned 18,” Wiseman said. “Come November 2018, I turned 18 but the insurance said they wouldn’t pay for it because it was elective, despite receiving numerous letters from my therapists about how the surgery could save my life.”
In order for Wiseman to eventually receive the procedure, he and his family had to pay $7,000 out of pocket.
Despite insurance refusing to cover his top surgery, a procedure which removes breast tissue to produce a masculine appearance of the chest, Wiseman was still able to receive the procedure from Dr. Cristiane Ueno, the only surgeon who was willing to aid transgender citizens in the state. Shortly after Wiseman's surgery, Dr. Ueno relocated out of state.
According to Stone, in contrast to Wiseman, the cost of medical care can be debilitating to West Virginians, but can be particularly troublesome for LGBTQ citizens who have historically been shown to live in poverty.
Overall, Denning said in order to truly understand the condition of West Virginia’s transgender health, it’s important to take a look at the state’s overall health system.
“In West Virginia we have challenges with healthcare overall, with many West Virginians struggling with access to healthcare,” Denning said. “When you consider that some portion of that workforce is not able to provide gender affirming care, it’s easy to see that accessibility is a significant barrier to care.”
How the System is Being Improved
In addition to composing a transgender health care guide, Fairness West Virginia also works to advocate for the passage of non-discriminatory legislation.
In order to combat an absence of medical options, Stone and Fairness West Virginia have began to lead the change in West Virginia by providing statewide health trainings aimed at improving healthcare experiences for transgender citizens. These trainings, which are hosted by Stone, provide medical professionals with the information that can make “make or break” a trans individual’s experience at the doctor, according to Stone.
“When I came out eight years ago I went to a physiologist in Morgantown and I had to teach her how to treat me,” Natasha Stone said. “People shouldn’t have to go to the doctor and tell them how to treat something they should know how to treat.”
From these trainings came a comprehensive health care guide which intends to provide information related to transgender friendly clinics and trans educated health providers for those interested in medically transitioning. According to Stone, the guide, which was also produced by Fairness West Virginia and released in Feb., was the product of the trainings.
“The guide is the natural extension of the (trainings). We wanted to let people know where doctors are and where they could receive quality healthcare,” Stone said.
In order to further challenge the statistics found through surveying, Stone said that medical trainings have expanded to include everyone who works at the practice, not physicians.
“When we’re training doctors or nurses, we make a big deal to say that you could be the best doctor for trans people… but if your front end staff is terrible you will lose patients. We make a big deal of saying that everyone in the clinic needs to be trained,” Stone said.
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In addition to efforts being made by Fairness West Virginia, various other state organizations are beginning to study local LGBTQ+ communities to better understand the challenges queer West Virginians face, and then begin to assess ways to improve these conditions.
A recent survey conducted by Out MOV, a non-profit organization aimed at providing social, educational and community events in the Mid-Ohio Valley, found that 73.6% of surveyed participants said that a lack of LGBTQ+ acceptance made their mental health worse.
According to Danielle Thrasher, the Out MOV board member in charge of surveying, having an access to LGBTQ+ affirming mental health resources is “the difference between life and death.”
“It can be generally difficult for individuals living in Appalachia to achieve mental stability,” Thrasher said.
Thrasher said that in addition to trans-friendly health care providers, the need for LGBTQ+ friendly mental health providers can positively impact queer West Virginians.
“In some situation, that LGBTQ+ affirming therapist might be the only support system that individuals may have in their lives,” Thrasher said.
While her research only studies individuals within a certain facet of West Virginia, she said she hopes her research will eventually help impact medical decisions in the state.
For now, despite all its challenges, Wiseman said that the best thing that medical professionals in West Virginia can do to improve the condition of its transgender services is to simply recognize the presence of the community in the state and attempt to make them feel as safe as possible.
“Trans people need to talk about things that might make cisgender people uneasy, so being prepared for those moments will help make a patient feel more secure,” Wiseman said. “[Doctors] should respect pronouns and names, even if they are not changed legally. Most importantly, ask [the patient] if anything you need to do causes them discomfort or Dysphoric reactions.”
Stone said that while these things questions may seem like common sense, some may still be unfamiliar with transgender individuals or have misconceptions about the community. Stone said these misconceptions, which have the potential to be harmful for individuals like Wiseman and herself, strengthen the need for more healthcare trainings centered around LGBTQ issues.
“Everyone has been really receptive so far,” Stone said. “After the trainings, doctors say they’ve learned a lot of stuff they didn’t know, which is good that they’re getting this training, but kinda horrifying because this would be common sense to some.”
For the future, Denning said that bringing gender affirming care into the health care culture is vital.
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“I think we have to address workforce issues,” Denning said. “We also need to review every aspect of the patient’s experience in a health care setting to identity where we fail to convey inclusion and representation.”
Denning said that she believes West Virginia’s health care system has the ability to affect the overall culture of the state.
“I would like to point out that there are ways in which we impact individual’s health and well-being outside of the health care system. Having laws prohibiting discrimination on the basis of gender identity and sexual orientation are imperative, and there is research establishing a connection between these laws and improving suicide rates among transgender individuals.” Denning said. “There is a lot of action that needs to be taken.”
Addressing COVID-19
Amid the rise of COVID-19, Stone said Fairness West Virginia has been moving medical trainings online to continue providing education while the CDC encourages physical social distancing.
“While we have lost the in-person impact that we believe makes training more effective, we are still able to provide professionals with the tools they need to provide competent and compassionate care to LGBTQ+ patients, in particular transgender patients,” Stone said.
Recent COVID-19 studies found that minority populations, specifically African American communities, were being disproportionally affected by the virus. According to Stone, West Virginia’s LGBTQ+ community has the potential to be impacted the same way if a statewide surge were to occur.
“If the state saw a surge in cases, it is very likely that (the situation) would be even more dire for LGBTQ+ people in the state,” Stone said.
While a surge in COVID cases has the possibility to be detrimental to trans West Virginians, Stone said that LGBTQ+ West Virginians are already facing specific challenges during this time.
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“Given Governor Justice’s executive order related to elective procedures, we’re seeing that some LGBTQ+ care is being postponed due to the interpretation of the language within the order,” Stone said. “Some examples we’ve seen so far is transgender people having to delay bloodwork, which could potentially delay start dates for hormone replacement therapy. For gay men, (the order) can mean it’s been harder to start PrEP or continue taking PrEP medication.”
Stone said that the executive order resulted in gender confirming surgeries to be be postponed until further notice.
Regarding those who may feel discouraged due to the virus outbreak, Stone advised staying home and using spare time to contact medical professionals.
“When it comes to healthcare, individuals should contact their doctor and health team now to discuss your care plans going forward,” Stone said. “Being proactive will help in the long run.”