Why is gender affirming care so expensive?

I’ve written quite a bit about the costs that I have incurred along my journey of trying to inhabit a trans body. But even as I look forward to the upcoming revision surgery on my vulva, it is a harsh awakening to realize that I am going to have to spend yet another $6,000+ for housing simply because Seattle has no transgender vaginoplasty surgeons and most insurance refuses to pay for out of state surgery costs.

So how much have I paid out of pocket so far for gender affirming care?

  • $5,000+ for electrolysis and laser hair removal on my face and body (not considered “essential” by insurance)
  • $9,500 in travel costs for consults, surgical recovery housing, and post-op appointments
  • $6,000+ for housing for revision surgery recovery

All told, I can account for over $20,000 in costs that insurance refused to cover.

I am one of the lucky ones. I am privileged enough to have a good job with decent health insurance so my co-pays are minor and I can afford to save up for these procedures. And I have a large network of friends who have generously donated over $5,000 towards those costs.

But can we talk about why these costs exist in the first place? Why is it considered ok for transfeminine people to have to pay for face and body hair removal to deal with dysphoria? In a world that demands that we “pass” as women to use public facilities such as restrooms, that is incredibly classist and discriminatory. And why does insurance not have to pay for the costs of getting an out of town surgery when there are no local surgeons available? My insurance now pays for cancer patients to get out of town specialty care but despite my advocacy for the past several years, continues to deny trans people that same right.

Luckily, starting in 2022, insurers in Washington State are now going to be required to pay for all doctor-prescribed gender affirming treatments and will no longer be allowed to label them as “cosmetic”. This is thanks to the tireless work of many many advocates and organizations who fought for years against insurance denials. And I hear through the trans rumor grapevine that Seattle may FINALLY be getting a surgeon soon who can perform vaginoplasties locally. But while that helps people here in Seattle, that doesn’t change the fact that far too many trans people around the US aren’t given equal healthcare access. We need laws in place federally to mandate coverage of gender-affirming care.

So next time you think of asking someone if they have had “the surgery” or make any kinds of assumptions about what trans people should look like, think about how expensive it is to look like I do. How inaccessible it is to the vast majority of trans people in this country to achieve what Laverne Cox, Caitlyn Jenner, and Elliot Page have done. And if you have resources, I encourage you to donate generously to your local trans fundraisers and places like the Jim Collins Foundation to help more trans people get the care we so desperately need.

Smelling like a girl

3 years later and still, one of my favorite parts about being on estrogen is that even when I’m sweaty and gross I still smell like a girl! It was one of the first changes I noticed and one of the most psychologically beneficial for my dysphoria.

BMI Cutoffs are unscientific and harmful

As I’ve written about before, BMI (Body Mass Index) is an unscientific concept that is often used to deny trans people life-saving surgeries. It is treated by far too many surgeons as medical fact, despite the vast body of evidence that it is wildly inaccurate, scientifically useless, and never intended by the creator to be used on an individual basis.

Recently, the only surgeon in Washington State, Geoffrey Stiller, formerly one of the few surgeons who would accept fat patients, updated his policies quietly to exclude people over the arbitrary and oft-used cutoff of 35 BMI. That means that at least two people close to me are now being denied gender affirming surgery without so much as a notification about the change. So I wanted to take the opportunity to share some scientific research recently published on the topic.

  1. Recent research shows that there is no correlation between BMI and surgical complication rates in trans people in either vaginoplasty (bottom surgery) or mastectomy (top surgery)
  2. “Obesity” (aka normal body variation) is very common in trans people seeking surgery (26% at Mount Sinai) and did not change despite efforts to lose weight prior to surgery
  3. BMI is not an empirically based method of denying gender-affirming surgery

Trans people should not have to bear the burden of educating providers about our care but all too often we are put in that position anyway. So next time a surgeon tells you they won’t perform surgery because of “policies”, please feel free to use this research to push back on them. Even if you don’t win a single conversation, hopefully you will plant a seed and prompt them to actually read the scientific literature on the topic. I found these articles with only a cursory review of the topic and I’m not even a doctor.

Citations

  1. Ives GC, Fein LA, Finch L, Sluiter EC, Lane M, Kuzon WM, Salgado CJ. Evaluation of BMI as a Risk Factor for Complications following Gender-affirming Penile Inversion Vaginoplasty. Plast Reconstr Surg Glob Open. 2019 Mar 13;7(3):e2097. doi: 10.1097/GOX.0000000000002097. PMID: 31044103; PMCID: PMC6467628.
  2. Rothenberg KA, Gologorsky RC, Hojilla JC, Yokoo KM. Obesity is Not Associated with Complications or Revisions after Gender-Affirming Mastectomy in Transgender Patients. Plastic and Maxillofacial Surgery. 2019 Oct 1;229(4):sup1. doi: https://doi.org/10.1016/j.jamcollsurg.2019.08.494
  3. Martinson TG, Ramachandran S, Lindner R, Reisman T, Safer JD. HIGH BODY MASS INDEX IS A SIGNIFICANT BARRIER TO GENDER-CONFIRMATION SURGERY FOR TRANSGENDER AND GENDER-NONBINARY INDIVIDUALS. Endocr Pract. 2020 Jan;26(1):6-15. doi: 10.4158/EP-2019-0345. Epub 2019 Aug 28. PMID: 31461357.
  4. Lisa M. Brownstone, Jaclyn DeRieux, Devin A. Kelly, Lanie J. Sumlin, and Jennifer L. Gaudiani. Transgender Health. ahead of printhttp://doi.org/10.1089/trgh.2020.0068

Rarely Shaving

I shaved this weekend for the first time in 3 months and all I got was some fuzz! I mean I occasionally have to pluck but so do most women. It’s really incredible to go from a thick, full beard to basically nothing in just over two years. It was expensive and painful but so worth it. Not shaving is such a relief and not having the dark stubble in photos means I’m a million times more likely to feel beautiful.

My past is like another life

Sometimes I look at photos of me from my past and think, “damn, that person was sexy.” Not as in a “I wish I was still that person way” but more of a “if that was a stranger, I would date them.” It is such a mind trip to have most of my previous photos feel like they are a completely different person. I’m glad I’ve evolved into more of the person I want to be, and yet it is still so weird to think how recent that shift into feeling like myself has been.

Braided Hair

As a child, I longed to be one of the girls. I spent a lot of time wistfully watching my sister and her friends braiding each other’s hair and wishing that I could do that too. Both because I liked girls and because I wanted to be one.

As an adult, I’ve definitely been sad that I missed out on all those practice years. That I didn’t get the training in hair care that comes with girlhood. But today, I decided to look up instructions and try to braid my own hair.

It’s messy and loose but I finally tried it and the good news is it can only get better from here.

Final laser appointment

On Wednesday I had what I hope is my final laser hair removal appointment for my face, legs, and chest. I am so close to having my hair reduced to what is normal for most cis women after spending thousands of dollars out of pocket for “cosmetic” dysphoria treatments. This time I paid $1,400 just for one session.

As I was sitting there, gritting through the pain, I was really struck by how much pain and expense trans people have to go through just to treat dysphoria because we went through the wrong puberty. A puberty which is totally unnecessary with modern technology. I really wish more parents could believe their kids and more doctors would be willing to prescribe puberty blockers to teens. It really would save so much money and pain in the long run.

Despite how much it has cost, I am really glad I had the privilege to get that done. When I first shaved my beard, the dysphoria from the stubble was absolutely overwhelming, even when freshly shaved. I can barely stand to look at pictures from that time unless I was wearing a lot of concealer foundation because the whole color of my skin was off. Now I can shave the few remaining hairs once a week and hopefully not even that now that I’ve had my final session. If I have more hairs pop up later, I can get a couple hours of electrolysis to finish it off.

Shaving off my beard was so scary for me because of that phase I had to go through. And there are days when I can really admire how stunning it looked in contrast with my femme presentation. But overall I am really glad I look more overtly feminine now. Sometimes things have to get worse before they get better but I am so glad to be past that part.

Finding Haven

Today I officially “come out” publicly as a writer. I am finally rebranding my blog to reflect what this is actually all about – Finding Haven.

My name is Haven Wilvich.

That may seem like a simple statement but it took me a long time and a winding path to get there.

I grew up in a Fundamentalist cult and a community that had very rigid views of binary, pre-determined gender and sexuality. I didn’t know any out gay people growing up and I didn’t even hear the word Transgender until I was in college. When I first came to my Christian university, I was still very much a model of the rigid beliefs that had been hammered into me over time. I was very conservative and the first time the LGBTQ group on campus approached me with a petition, I balked at it and turned them away (politely).

Shockingly, it was my theology classes the next year that helped me change my views. I had a series of excellent teachers who slowly helped me break down and analyze my beliefs non-judgmentally and without a pre-determined outcome. They gave me the space to eventually realize that I wasn’t practicing something I believed but rather parroting what I had been taught. So I opened my mind a bit and started trying to figure out what I actually wanted to believe.

It was during that time that I first saw an event advertised on campus for a panel of pastors talking about homosexuality in the church. I decided to push my boundaries and attend, hiding in the back row of a large classroom. What I saw for the first time there was passionate Christians talking about how queerness and faith didn’t have to be opposed but rather could be accepted and loved. I was intrigued and decided to start paying more attention to the LGBTQ group on campus.

The next event I attended was a Transgender Panel. It was my first time even hearing of the word and it definitely pushed my comfort boundaries. But seeing out and proud trans people for the first time was eye opening. I came away from that event resolved to learn more about the LGBTQ community and become an “ally.”

I still didn’t realize that I was trans at that point because I thought that to do that you had to look a certain way, be very feminine (binary), and “pass” as a cisgender woman. I knew that I would never be able to pass so I continued to ignore my latent gender feelings.

The LGBTQ discussion group that I began attending was called SPU Haven.

Over the next couple years I became a loyal member and began calling myself a “gender non-conforming ally.” I eventually moved into leadership of the group and that’s when the shit hit the fan.

You see, homosexuality at our conservative university was considered to be in violation of the “Lifestyle Expectations Clause” that they made all incoming staff and students sign. What “homosexual behavior” actually meant, no one knew. But it did mean that our group found itself the center of controversy.

The university Administration decided at one point that we were pushing the boundaries too much and told us that they were disbanding the group. That we “no longer existed” and couldn’t meet on campus. Well of course being the baby activists we were, we kept meeting but this time in a open space instead of a reserved room. It harmed our ability to actually be a safe space but it got their attention.

Word of this ban eventually reached the local news sources, then other news sources across the country, and finally a group of alumni who organized a letter writing campaign. It was an intense 6 weeks where I found myself on the cover of the school newspaper every week. But eventually we scared the Administration enough that they privately apologized and gave us back our meeting space. A few years later, the group became an officially funded club.

My activism history was shaped by that experience of having to fight for my space. It took me a long time for my work to become truly intersectional, but that group planted a seed and was incredibly important to who I became.

So when I was looking at choosing a new name for myself to reflect my feminine and genderqueer reality, I chose Haven. It means sanctuary, safe space, and respite. Which is what I strive to continue becoming.

How I knew I needed Surgery

Content Warning: I’m going to talk explicitly about sex in this post.

How did I know I needed surgery? It is a question I get a lot in different forms and it’s a good question, particularly for other trans people to ask each other.

My earliest inklings were from when I first learned what vulvas were. I was immensely curious as a child so I secretively turned to my local library and sex education websites to find out what women had that made them so amazing and supposedly so different. That’s when I found out the beauty that was the human vulva, vagina, and especially, the magical clitoris.

What was initially curiosity quickly turned into an obsession. And I doubt it was the same kind of obsession that my cisgender peers were starting to have as their libidos awakened. It crept into my psyche and my dreams. It wasn’t long before I was having both sleeping dreams and daydreams that involved strong, powerful women with both penises and vaginas. Because to me, the peak of human achievement would be having the best of both worlds. This was before I even knew that trans or intersex people existed.

It took me years of suppressed queerness before I finally admitted those dreams in group therapy as an early adult. And in the meantime I went through phases of hyper-masculinity as I tried to reconcile these desires to experience a vagina that kept pestering my brain. When I first had oral sex with a woman, the obsession only grew.

Eventually I finally got enough exposure to trans people that I realized I was one too. Not out of peer pressure like the media tries to paint it, but from seeing examples of people like me. I started out slowly and it took me awhile of my social transition before I decided to take any medical steps. You can see a lot of that progression if you read the early posts on my blog.

I had a lot of hesitation about starting estrogen because I was worried it would change how my already anxious/depressed brain worked. But once I started, I knew I could never go back. After the initial adjustment period, my brain had never felt more “right” and like I finally had the right operating system installed. But it did fundamentally change how I experienced sex.

I have always been hesitant and anxious about using my penis. But after starting hormones, there was some significant rewiring of my nervous system that took place and changed how I felt sensations. Suddenly an appendage that felt like a blunt tool now felt like a fine tip brush. It honestly felt like I imagine an inverted vagina would feel with a clitoris on the tip. My sensitivity increased immensely and I also lost all desire to use it for penetrative sex.

I had already started to think about surgery but my initial explorations had all been about whether or not it was possible to have a vagina and a penis simultaneously. I thought for sure that’s what I wanted because that’s what all my dreams still involved. I scoured the internet and couldn’t find anyone except naysayers who claimed it was anatomically impossible.

Finally, the first surgeons started to do what they called “penile preservation vaginoplasty” and my dreams were vindicated! Except ironically, by the time I discovered that, I was beginning to realize that it wasn’t what I wanted. I came to understand after almost 2 decades of dreaming that that form was more about what I was attracted to, not about what I wanted for myself.

Once I finally accepted that I wanted a vaginoplasty, the rest was just about getting through the medical gatekeeping. Last year when I went for my consult, I was sure that it was what I wanted. Now I am 120% sure and for months now I have been counting down the days (12) until I could finally achieve what I’ve secretly desired for so long.

I’ve been trying to decide for a couple years now if I am asexual or if I just have a low libido and as I think about life post surgery and all the sex I can have uninhibited, I think I finally have my answer. I just needed the right parts!

I’m in the home stretch now and I’ve started taking the pre-surgical meds. The Gabapentin is making my brain a bit hazy and I’m rather scatterbrained so hopefully this blog post makes sense. But in 6 days I pack up the car with my partner who will be my caregiver and her partner who lives with us and we drive down the coast to San Francisco.

12 more days!

Insurance approval

I know to most cisgender people this doesn’t sound significant but I just got word from my surgeon’s office today that I got insurance approval for gender confirmation surgery!

This is one of those things that should be a normal occurrence. But for trans people, we have had to fight so hard for generations to get these surgeries covered by insurance that it is still a big deal for us to have these basic rights. I remember not that long ago when my friends were going to Thailand because that’s the only way most people could afford to get surgery out of pocket. And because of that legacy, there are still so few surgeons in the US that even those of us in major cities like Seattle have to travel out of state and incur huge expenses to get these surgeries.

It’s also significant because of the amount of medical gatekeeping we have to endure to get there. I can’t think of a single procedure where a cis person has to get more than one letter of support. But most trans people require 3 letters from MDs, therapists, and PhD level psychiatrists to get this insurance approval.

For me, I got these letter last fall because I was told the surgeon was going to ask for insurance approval in late winter. But they waited too long to submit paperwork so I had to go get the letter updated because they needed to be within 6 months. Which meant that the first time around I got an insurance denial which was scary even though I knew why.

The point of this story is, if you have the authority to be a medical gatekeeper for a trans person, PLEASE make it as smooth as possible for them. There are a variety of reasons that trans people don’t want surgeries and shouldn’t need them to transition. But for those of us who do, we are usually overwhelmingly sure that this is what we want. So don’t make it harder for us than it needs to be. Trust us to be the experts on our own experiences. And if you get asked for a perfunctory piece of paper, just sign it.