The Choice is Yours

By David Everly / Winter 2020

Dear Daniel,

As a fellow member of our community, I know that you will undoubtedly, at some point in your progress, need to navigate the complexities of our current healthcare system. Over the course of the time that you navigate this system, especially as a man in your current situation, you will face many contradictions. The medical community and system, as a whole, is very skilled at putting patients into categories. It was not until as recent as the 2010’s, however, that the medical community began to make room for the category of intersex and transgender patients. Because of the newness of this entire system in the medical world, there are a still many doctors that you are going to encounter that will not be familiar with the literature, will not have had their training in areas pertaining to your care, and will, intentionally or unintentionally, discriminate against you and your care on the basis of your gender expression and take away your choice of who you may go to when you have some of the most defining surgeries of your life.  

The Kaiser website, to name just one example for you, states that they “proudly incorporate and provide total coverage for intersex and transgender patients into their care plans.” They have made this statement since 2009, but, with the exception of covering HRT, did not begin to cover any surgeries involved for such patients until 2015. Furthermore, for two of the most important surgeries of an intersex or transgender person’s life, phalloplasty or vaginoplasty, when covered by the corporation HMO of Kaiser you are not allowed to choose your surgeon. They have a group of doctors set up who do these surgeries that are specifically picked for the patients. However, what they do not tell you is that there are many doctors outside of the Kaiser network who have been willing and continue to be willing to work with Kaiser, some of which have a far better medical reputation than Kaisers current group of surgeons within this group. Kaiser put together its current group of surgeons, more than likely, from an economic vantage point, rather than with regard to what would be best for the patients within this group. Furthermore, different doctors provide a patient with vastly different outcomes, some being unwilling to do certain parts of the procedure and some having different styles of producing certain aspects of the result and, to elaborate further, Kaiser continues to hold as a standard that revisions to these surgeries, which have a high complication rate, be done with the same group of surgeons and be considered “cosmetic” rather than medically necessary. Why is it that a system like Kaiser would claim to have its patients best interest at heart and yet not let this small and vulnerable group of patients have the right to choose the surgeon that is going to determine the outcome of what is arguably the most important and defining surgery of their entire lives? I would argue that this glaring contradiction in the way of taking the patients choice from them gives the answer to this question a resounding no.

When I underwent my surgeries, Kaiser was still in the process of putting together the current medical group that it has obtained for the phalloplasty surgery. However, I could not receive any surgeries for many years of my transition due to the fact that none of them were covered by Kaiser. This large HMO with a great reputation refused to cover any surgery given to me due to the fact that they viewed all of my surgeries as cosmetic while simultaneously paying for me to receive hormone replacement therapy. There were a myriad of issues I could have ended up with as a result of this, and which many patients unfortunately did, including endometriosis as a result of the buildup of endometrial tissue lining my previous internal reproductive organs prior to my hysterectomy. Hysterectomy was not covered by Kaiser until 6 years into my transition. In light of all of these issues, it is still very fortunate that we have received and continue to receive coverage for our surgeries in this country, especially in light of the current political climate. It is undoubtedly sad, however, that we still face such glaring contradictions in the way of who we can choose as our surgeons, having to do the extra footwork to find a primary physician who is educated about our community and will not discriminate against us in the way of our care, and not knowing whether or not when an emergency happens if the doctor that see’s us will understand anything pertaining to our care plan or our medical situation, or be willing to try to understand for that matter.

During the course of time that I have had to navigate these challenges, I’ve found myself tottering between bouts of hopelessness and a deep feeling that the current world around me and the system of healthcare in this country just flat out did not care about my wellbeing. I’ve been frustrated, dejected, demoralized, depressed, and have felt immense amounts of loneliness, emptiness, alienation, isolation and anger at a system that claimed to have my best interests at heart but simultaneously seemed to try to keep me from receiving it at every turn. My best strategy and tip for you during the time that I know you will have to face this system is to remember that regardless of the fact that there are contradictions at play, you are in control to how you respond to those contradictions. It would have been immensely easy for me to give up during the course of the seven years that I spent waiting for the medical system to wake up and realize that I was in desperate need of surgeries such as hysterectomy to be covered to prevent endometriosis before I actually got endometriosis as a result of the HRT that they were covering for me as their patient.

After I got my hysterectomy, it would have been equally easy for me to respond in a negative way to the fact that I still needed to wait for the medical system to cover phalloplasty on the basis that they refused to see it as necessary for us as patients and, rather, as a cosmetic choice. In essence, I was living as a man for all of my adult life by choice due to the ability to obtain hormones without the ability to obtain the surgeries necessary for a complete transition. A group of individuals within our community and I petitioned Kaiser to include these surgeries for years. We went to court hearings and were present at the point in time when the ACA began Covered California. After that period of time, however, Kaiser still did not wish to cover surgeries for transgender patients until legal action was taken by the state of California, which enabled us to have access first to top surgery, then to top surgery and hysterectomy, and finally to all of the surgeries necessary for a complete transition.

There is a deeper problem with our healthcare system that does not begin or end with these issues and stems from the fact that we spend more money on healthcare than any other nation in the world and yet still have some of the worst ratings in terms of care and health quality in this country. In short, our healthcare system is not based on the health of the personalized care of the individual but, rather, on a capitalist system which seems to value competition over the individual health of the patient. This is a tragedy because of how many resources we have at our fingertips in this country. However, even bearing this in mind, we cannot let the contradictions at play here define how we live out our day to day lives in a negative way, because while there will always be contradictions within systems based on foundations that do not have what’s best in mind for its subjects or patients, there will also always be the choice of response and this, more often than the contradictions in and of themselves, has the power to define our outcomes.