Trans Healthcare Access in Mass

"Usually the only times in the past that I’ve needed like, you know immediate care like that, have been something more serious or I’m genuinely concerned about something. And in that case, based on where I live, my only options are either an urgent care center or like literally a hospital, depending on how severe I deem whatever it is to be... instead, what ends up happening is usually the first reaction as a patient, as an individual, is if something goes wrong, the first thought that comes to mind is can this wait? Like, can I live, can I stick it out and set up an appointment for somewhere in the future or is this like life or death? That shouldn’t be the thought process, but that’s sort of how it is."

- Participant Three

"I don’t even really know how the transition process, works. Legally and all that stuff. Like of course I’ve watched people go through it, but I don’t really understand it. And when it comes down to that for me, I know at the point in my life, my family’s going to be gone. I’m not going to have a person like that. So, I want to create that relationship in the health setting so that I can ask those darn questions, because I’ve never had a chance to in my life."

- Participant One

"Most people think I’m a butch lesbian. Because that’s generally how I passively sort of look, so when I go into an urgent care situation, I am using my given name, and pronouns, and all of that, and all the documentation that goes with it... I would say yeah, that is a choice I’m making. Particularly because part of it is I don’t want if I’m going to the doctor, to a doctor, for a stomach issue, I don’t want to go to the front desk, give them my name and things like that, and then hand them a driver’s license that doesn’t match and then have to deal with that."

- Participant Six

"I wanted to definitely get an appointment set up as soon as possible, purely because I knew if I did not that I would be – end up putting it off for much further in advance, and it was something that I really wanted to make happen in my life, in terms of beginning that aspect of my transition. It was mostly for myself, that I needed to self-motivate, you know, to do that. And if I put it off any longer it wasn’t going to happen, because I struggle with a lot of mental illness and stuff, and it was the kind of thing that if I didn’t go for it, you know – set up an appointment within the month or something for example, it was just never going to happen and that was going to be worse for me."

- Participant Three

"I was still seeing my pediatrician, and she has always been very nice and helpful and just overall a very good physician, but I do recall that when I was trying to – first starting to explain to her you know what I was feeling transition-wise she didn’t really understand it. It was a difficult experience, not negative per se, she wasn’t not-accepting of it, or didn’t make me feel bad or unsafe or anything like that. But I do remember it being kind of frustrating, because I got the sense that for however long that she had worked as a pediatrician she didn’t really come across this that much, and didn’t know how to respond to what I was telling her. She was like not informed enough about trans experiences or identities or anything that that entailed, so it was difficult because as a patient you go to physicians to try to get their input and get help from them and have them sort of tell you what to do and almost go for guidance sort of thing. But then when it’s flipped and then you have to explain something to them it becomes kind of tricky and frustrating because you’re not quite sure how to approach the situation anymore."

- Participant Six

"I started at my primary care, and she wasn’t, she shot me down and said that she had never heard me talk about it before, and she didn’t feel comfortable treating me or sending me to an endocrinologist. So, I just stopped going, and then I called Fenway, and it took like four months out to get an appointment. So, then I got my first appointment, and then she had to see me three times before I could get a shot, so – and there, also it’s hard to get an appointment unless you really really need it. It took about, it took a full year to get on hormones after I started vocalizing it."

- Participant Eight

"Before physically changing my name, transition, that was you know not fun that I would have to get mail in you know that said my old name and my gender and everything. This isn’t about me, but I have a friend, that he just got his name changed, and he’s already had all of his surgeries, he was looking into the final stages of phalloplasty, and the people the billing people sent them his name, his preferred name on the statement. He put it on Facebook, he was all excited about it, because they knew he was trans and they took that into consideration, and I thought that was a pretty cool thing."

- Participant Two

"I have bounced around from one primary care to another. Either they won’t call me by my name and my correct pronouns, or they’re willing to but they’re all the way in Boston, and I cannot afford the gas, the high co-pay, and the time off work, and paying for parking. I have to choose between a healthcare professional that respects me but costs me well over $100 for a visit, or one that doesn’t respect me and makes me incredibly uncomfortable and calls me by my deadname."

- Participant Five

"I was trying to go with Planned Parenthood initially because I had I have been a lifelong supporter of planned parenthood and I was trying to set up something with them, I think they have a branch in Boston. They were, they were just packed full and I think I came across that with a couple other places as well, where just like, there’s such high demand for it and so few places to go that the places I did find were absolutely booked through for months and months and months in advance. It was impossible to get an appointment with them."

- Participant Three

"What’s made it positive has been if they were educated on being transgender. Just in general. If they were- if they understood how to identify you, you know using your pronouns. If they understand physical transition at all because it’s been very positive when I go to my pcp and I don’t have to worry about anything. [They] know my gender and the surgeries I’ve had, and what that all means."

- Participant Two

"Doctors make me very uncomfortable as a trans person, because – I just know how unaccepting the health field can be. So I just stopped... it was pretty nervewracking. Cuz it was the first time I was seeing a physician in two years."

- Participant One

"I never changed my voice as part of the transition. So, I was running into a lot of issues on the phone with people calling me sir, and even if I told them what my name was, I would still get called Mr. LASTNAME. So I took a pre-emptive approach to dealing with people on the phone, where they would ask my name and I would tell them my last name is ___, my first name is ___, and I prefer to be called Ms. LASTNAME or Ma’am. So, I don’t even give them the opportunity to make that mistake."

- Participant Four

The following visual model was created which illustrates the process described above. Starting with both the internal and external motivators to seeking medical care of any kind and resulting in a relationship with a trans-knowledgeable primary care provider (see Figure 1).

Figure 1.

Primary Care Access Model

Note. The Primary Care Access Model depicts the flow of the process identified by survey participants. Due either to an external motivator such as specialist referral requirements or insurance coverage requirements, most participants sought care with a new medical provider in order to pursue medical and/or surgical transition related medical care. With the motivation generated from the external or internal drive, participants utilized online searches for transgender medical providers. Evaluation of public facing materials was key, but ultimately, obtaining “references” from others within the LGBTQ+ and Trans identified communities was a major determining factor in which provider was selected and contacted to initiate care. Primarily, study respondents were initiating care with a new provider specifically to pursue hormone replacement therapy (HRT) to ease dysphoria, typically provided through a specialist such as an endocrinologist. Once at the appointment and after reviewing the informed consent process, participants were offered the option of receiving routine healthcare and preventative care with a primary care physician within the same practice, offering both transgender specific medical care as well as routine preventative care, through the same provider. This resulted in an ongoing relationship with a trans-knowledgeable provider.

Experiencing Safety and Comfort While Accessing Healthcare

The participants identified experiences of both safety and comfort while accessing medical care. Safety was identified as one’s feelings and expectations of physical and emotional safety while accessing care. Comfort was identified as a more subjective perspective and experiential feelings of ease, confidence in the provider, and feelings of welcome and inclusion. These trends were most observable in the following aspects of the data, starting with self-reported incidences of transphobia as well as the types of observable signs of comfort and safety that participants reported. Participant six discusses how a positive and trans-knowledgeable first contact can positively impact patient access experience:

"The scheduler at the gender clinic here in my college town, I love her, she’s wonderful, every time I call she’s very knowledgeable about her job and about how and specially because I was a new patient and it was a new avenue of healthcare for me, and I didn’t know a lot of what I was doing, however she was very knowledgeable and very helpful. And she was very good at helping me get what I – about answering the question that I was trying to ask and not necessarily the one I was asking... she made sure to check in on things like name and pronouns, which I find especially important at a gender clinic."

- Participant Six

"I’m an adult but going to the doctor’s is scary, and I wish that more people would be aware of that and be more sensitive to that, especially for our community, the LGBT community. And be more reassuring and helpful with that."

- Participant One

"I think I knew ahead of time that they were lgbtq friendly, so I automatically was just comfortable with them like right off the bat. I think having that established kind of, feel to them made me comfortable because I was like okay, all the other- or a lot of the other trans people are going here. This is where they’re getting help, so I know for me that this is gonna be helpful for me, to further my transition."

- Participant Seven

Self-Perception of Transphobic Incidents

It was noted that during the course of the interview questions, 100% of the participants reported at least one instance of accessing medical care which was considered by the researcher to be uneducated at best and discriminatory at worst, with an overwhelming frequency of reported “inconveniences.” These inconveniences as described by participants included instances of pharmacy employees refusing to use or accept paperwork from a provider with a preferred name or refusing to use utilizing preferred pronouns. Additional examples included being a witness to providers discussing the added stressors of coordinating care between providers and care systems when a patient has a preferred name or a legal name change.

Participant five discusses navigating systems of care after a legal name change resulted in inconsistent and invalid name and identification documents during an emergency room visit:

When explaining the process of accessing healthcare, participants often referenced “having to come out” or correct members of the medical team who assumed or intentionally utilized incorrect or out-of-date names, gender designations and pronouns, and health information related to their transition or status as a transgender person. This process was described as causing significant anxiety (all participants), up to and including panic attacks for some. Participants reported instances of being forced to publicly correct medical providers or team members, such as the following example of participant two discussing experiences with visiting nurses following genital surgery:

Participant one on how dysphoria being triggered creates discomfort:

It is interesting to note, despite 38% of participants directly stating that they had no perceived negative experiences accessing healthcare when asked, 100% of participants ultimately reported at least one incident of disrespect, harassment, and transphobia, up to and including being kept from appropriate medical care, being refused care due to status as a transgender person, being asked inappropriate and unnecessary medical questions regarding the individual’s genitalia or sexual preference, etc.

"Just because I don’t know what I’m going to run into, I have had mostly positive experiences, but I’ve also had those negative experiences where it’s terrifying. So, no matter what, I get scared for any kind of medical visit."

- Participant Two

"I don’t think my experiences are anywhere near universal because I feel that I’ve been overall very very fortunate and have had generally positive experiences apart from the things that I mentioned. And I’ve heard just talking to friends and loved ones about their experiences and hearing what other people within the trans community go through. I definitely get the sense that positive experiences are much less common than would be preferred. You know it’s usually a lot more difficult for people to receive healthcare in a quick and safe manner, and – oh and also the fact that I also feel it’s important to mention that I think that a lot of that has to do with the fact that I am in a more privileged position given that I am not disabled, I am not a person of color, I am relatively middle class, all of that I think has generally aided me and allowed me to have an overall pleasant experience with healthcare, compared to the people who would not be in these positions."

- Participant Three