As a registered nurse and a transgender woman who lives in Champaign, I am disturbed by the state of medical services for gender diverse individuals in Champaign-Urbana.
These services are woefully lacking in the area. This is primarily due to the fact that Carle, the area's largest healthcare provider, has no providers that specialize or have even basic training in gender diverse healthcare. If they do, they are not listed on the provider directory, nor have I been able to connect with them in the last year of my work at the organization, nor in my local advocacy for the UP Center. A simple search of "transgender" or "gender diverse" on the website yields only a few results, years old.
There are a few providers that are willing to work in this type of evidence based healthcare, but they lack training, and as a patient I have found myself leading the conversation in what types of interventions should be pursued. For patients with a low level of health literacy, this means their options are limited at best and their avenues for advocacy are virtually non-existent.
There is also a remarkable level of inconsistency with providers and what is required for more complex services. For instance, one provider required multiple letters from a therapist and a primary care provider simply to schedule a consultation, while another was ready to operate without even a mention of a letter for the indicated procedure, or even that I had discussed the procedure with a therapist. Neither of these approaches are best practice, something that Carle prides itself on following in every other aspect of medicine. Why, then, is it so different when it comes to healthcare for the gender diverse community?
There are a few providers in the area that do have training and experience in gender diverse healthcare, but they are virtually inaccessible if you are a Carle employee. Carle has a "company store" approach to the healthcare its employees receive, having to seek treatment from Carle providers or be forced to pay out of network rates, which are substantially higher. Furthermore, the providers that are willing to provide care are incredibly overbooked. I have not seen my provider since August, and a follow up appointment with their nurse practitioner was cancelled as there was “nothing they could do for me”. Imagine how you would feel if you called your doctor for a routine procedure and they told you there was nothing they could do.
Carle's lack of commitment to this population has real world effects. As a transgender woman, I experienced discrimination from my peers — trained medical professionals — about my gender identity. I often wonder if Carle had basic training in place, would those peers have made the same tasteless, offensive, hurtful remarks? How would Carle have responded if those same employees had made jokes about my race, or religion, or disability status? While much lip service is made about wanting to be an inclusive and welcoming workplace and provider, actions speak louder than words.
Gender diverse individuals have one of the highest risks for suicide among any minority population. While detractors will say that this is because being transgender is a mental illness, the reality lies in that gender diverse people experience a lack support from their communities and experience discrimination based on their identities. By not providing these services, the medical community harms this patient population by continuing this discrimination and exclusion, which leads to poorer mental health outcomes. This is exacerbated when a gender diverse individual seeks care and is misgendered or called by the wrong name, frequently in a room full of other people. Experiences like this erode trust and often cause patients not to return to seek treatment for other aspects of their medical care as well, which further hurts an already marginalized and disadvantaged community. I reached out to others in my community, and this is what they shared about their experiences:
For many transgender people, something as simple as getting a COVID test or bloodwork done can be daunting. At this point in my journey, I have gotten much better about advocating for myself and feeling comfortable in a medical setting, but even recently, something as simple as an endoscopy left me feeling panicked. Could I trust the nurse anesthetist putting me under? If I had a reaction to anesthesia, could I count on the medical staff to do everything they could to help me? These are the types of thoughts that go through gender diverse people’s minds after experiencing microaggressions. While it may not seem like a significant act, something as simple as being misgendered or dead-named can cause thoughts like, “does this person agree with my existence?” or “is this person going to want to help me get the best care possible?” They should know that everyone around them is interested in ensuring their wellbeing 100% of the time.
In the United States, quality medical care is a commodity. Most people get their insurance through their workplace, or like me, have Medicaid. Things like HRT, top surgery, and even bottom surgery can be approved and paid for by Illinois Medicaid. For me, without my insurance, I would have never been able to get on hormones at all, and who knows what kind of mental state I would be in. Many people believe that these things should not be paid for by state taxes, but they fail to understand that these treatments are life-saving. Transgender people are everywhere, and we contribute to the American system. We deserve to exist, and we deserve to feel good about it
- Heather Johnson
I’ll start by saying that I feel really fortunate in how my journey so far with transgender healthcare has been. This feeling comes from the fact that I have a lot of privilege. I am able to choose the clinic I want to go to for health care. So many people do not have this freedom, and this is especially difficult for the trans community when finding an affirming healthcare provider is so hard. Here in Champaign to my knowledge you have Carle, Christie Clinic (this is where I currently go and have had good and bad experiences), and Planned Parenthood (this is where I started my transition, and the place in which I have been treated the best).
In May I had my first appointment at Christie Clinic in which I was trying to establish a new PCP. My name had been legally changed, but I had yet to update my medical card because of bad/inadequate information I had been given about updating my name with my insurance company. I asked at the front desk if I could get my name updated, I was told, very impatiently, that my name could not be updated because of my insurance. So I was dead named as my very first experience with a new doctor. Luckily, my doctor is more competent and compassionate and told me that they can refer to me by a preferred name, which I was willing to accept until I could update my insurance. Since then it has been hit or miss whether or not I am dead named when I am called back for an appointment (just an extra added bit of anxiety for an appointment that can already be anxiety inducing). I was interested in getting a referral to a surgeon for trans related care. My PCP thought she could refer me to general surgery, but was informed that no general surgeon in the Christie system can perform a gender affirming surgery. I was told to contact my endocrinologist and she informed me that I should expand my search to Chicago, while offering no further help. It really feels like I need to possess secret knowledge of the way in which the medical system works, just to get the care that I need, to live a more complete, comfortable, and affirmed life.
- Daisy Ford
The mental strain associated with trying to get my procedures has caused my feelings depression, anxiety and suicidal ideation to go through the roof. I can afford the care I need, barely. I haven't a prayer in hell of affording any surgeries though. I can't imagine how horrible it would be without an income stream like mine. When talking to my employer about trans related medicine being covered, he said , “Asking insurance to cover transgender care is like buying a car, and asking your car insurance to cover painting it a different color.”
- Danielle (last name withheld)
This is not a new aspect of medicine. Evidence based practice exists and is accessible. One simply needs to look for it. Champaign-Urbana is, by and large, supportive of gender diverse individuals. The majority of healthcare providers are caring and want to help their patients and follow the best medical practices available. Why, then, does such a disparity exist? At the organizational level, our local medical institutions do not prioritize or care about ensuring this patient population receives the same standard of care that cis patients do.
They need to do better. People's lives are at stake.