I had a routine follow-up visit with my surgeon earlier this week to assess healing from my procedure 3 weeks ago. The good news is that the discomfort is mostly gone, although there still a teeny bit of bleeding. We were all very happy with progress.
The visit led to a broader discussion that I was much less happy about. The main thrust of the conversation is that many companies and insurance policies don't provide adequate support for trans employees, don't seem to want to understand the shortcomings, and at the end of the day may be doing more harm than good.
Let's start the discussion with recognition that transpeople often have special needs and issues when it comes to overall wellness. That's a broad statement, and I could spend an hour expanding on it. However, for the purposes of this discussion recognition of that singular reality is key. It has been getting more and more visibility in recent years (Here's an example) but for those of us living these realities none of this is new news. The problem for a generation of us, and still for many (if not most) transpeople today, involves paying to address these needs.
Thankfully, the medical community is aware and actually provides some good guidance for companies looking for it (here's an example from the AMA). But that doesn't mean things are better for the bulk of us. If you read the statistics in this 2019 paper it tells a very dangerous but real story. These are our issues, and those thinking that our insurance coverage will help us to address some of them can be in for a very frustrating, angry awakening.
In order to put this into context I need to bring us back 15 years or so ago. A few of us were beginning to do the initial legwork needed to build the business case for insurance coverage for trans wellness. Most people from my generation had to pay cash for everything - nothing was covered by insurance - which made most of these procedures outside the realm of possibility for many who wanted/needed them. As a result, there was a small group of specialists whose main focus was to support our community. If you went to any HBIGDA conference (now WPATH) the numbers of medical specialists and clinicians was in the low hundreds, and it felt very much like a community.
In those early days people like Mary Ann Horton, Andre Wilson, Dr. Jamison Green, myself, and a few others began to demonstrate that the cost to companies for removing exclusions preventing trans employees from accessing needed healthcare was far less expensive than thought by collecting data and presenting it. A key source for that data was the City of San Francisco, which was the first large agency go provide insurance benefits for trans employees in 2001. Details here.
As the actual costs became easier to identify, one of the next problems to overcome was within the insurance industry itself and the lack of diagnostic codes to explain the various procedures that are broadly contained under the "Gender Confirmation Surgery" umbrella. At the time there were two diagnostic codes: one for MTF procedures and the other for FTM procedures.
The biggest problem becomes apparent very quickly when you consider that a transwoman might have a vaginoplasty and it could be covered. However, when she went back to the second step - the labiaplasty - it was denied because she was told that she already had that procedure. The problem is even worse for FTM patients where top and bottom surgeries are often a progression of procedures that gradually lead to a desired end result.
Thankfully, a few key medical practitioners were supportive of this move for better codification of the actual procedures involved and helped to develop a more accurate set of diagnostic codes. That was key before broader insurance coverage could have the real value it needed to have.
The third piece of this was the HRC Corporate Equality Index. Jamison and I were on the Business Council and were approached about adding Trans Wellness criteria for the first time. Up to that point trans elements of the CEI focused on adding "Gender Identity and Gender Expression" to a company's EEO policy, having a defined transition policy, and training that included trans topics. Trans wellness was a whole new ballgame and there was concern that adding too much too quickly would make it impossible for employers to make the changes needed to maintain their perfect scores.
There was concern that if we did this wrong scores would go down and the message would be "Corporate Support for LGBT Employees is Declining" when in reality it was simply a cause and effect of raising the bar significantly. To HRC's credit, we worked long and hard on getting it right (Samir Luther is one of the unsung superstars of this work.)
When we first rolled it out we did it gradually. Companies only had to have 3 of 5 criteria to receive a perfect score. We took some flack for that because some in the trans community wanted them all. But the more pragmatic approach was to help companies understand what was being included and why, and helping them to get there. In the end, that's what happened.
The key to all of this was to have at least one plan where exclusions that had been barriers for transpeople to access benefits were removed. Many felt that would open the door for transpeople to get the services they need. In fact, in many cases the opposite has happened.
That's the background. Let me provide some real-life, current-day examples of significant issues.
Let's consider the situation where a transman went for upper surgery, and the "mastectomy" was covered. However, the re positioning of the nipples was not. Fail.
In the old days some companies removed barriers but put a cap on the amount of money an employee could spend. Often times these caps were unrealistic. Thankfully, many companies ended up removing these caps but apparently they're coming back now. As a result, transmen working for a company with these caps can receive top surgery but adding bottom surgery would put them way over the cap. As a result, it would need to be out of pocket. In once recent situation a patient needed to make a decision about having a significant procedure, or having an anesthesiologist. Having both put the cost above the cap. Fail.
Even when a company covers the procedure, the policy often dictates how many days in the hospital they will cover. We discussed a company that limits the nights in the hospital after SRS to 1. Doctors traditionally recommend 7 or more. Taking an SRS patient out of the hospital the day after surgery opens the door to all kinds of dangerous, potentially live-threatening complications and demonstrate complete misunderstanding of what is involved in these procedures. It's like telling someone who has a heart transplant that the insurance will cover 1 night in the hospital. Fail.
Many insurance policies exclude procedures they identify as "modifications or revisions". It could easily be argued that many procedures required to achieve the necessary end result is often not one procedure, but are a series of procedures that are staged and necessarily need to happen one after another. However, as doctors seek pre-auth approval for these procedures they get denied because the insurance company won't accept the fact that they are stages of completion. They qualify them as "revisions" and as a result deny them. Fail.
One of the things that has happened is that with all the insurance coverage more and more doctors have gotten in the business of doing trans-related procedures. Frankly, many of these people are not qualified to be doing this work. Regardless, when it comes to seeking an in-network provider vs an out-of-network provider the limitations become real barriers in and of themselves. Unless you've got someone who's really qualified in network, you can have a hundred people who aren't and you're worse off by choosing one of them. Cheaper is NOT better in this very specialized field, so choosing the right surgeon is absolutely critical to a healthy and satisfactory outcome. Fail.
And then, when you do end up with one of those doctors you often find that the end result is unsatisfactory, or filled with health-related complications. Fistulas. Ongoing bleeding. Infections. Urinary tract issues. Functional issues. One doctor reported that upwards of 45% of his patients required follow-up procedures. And do you think that a patient would go back to that doctor to fix what they didn't do right the first time? Usually not. Lack of recognition of this is a health risk and a danger to transpeople who can't get past the "modification or revision" exclusion. Fail.
What about those of us who transitioned years ago and didn't have procedures because either we didn't need them at the time or couldn't afford them. We need them now, but find ourselves facing denials on a variety of fronts. I won't go into some of the issues I just dealt with other than to say that once you experience some of this personally it all gets very real. It got real for me.
My insurance policy said I needed two letters from therapists to have any surgery "down there". Are you kidding? Therapists? This requirement is loosely based on the WPATH Standards of Care (SOC) requirement that the doctor obtain two letters before doing SRS. However, companies are reading some of the basic elements from the SOC, mis-interpreting them, and then applying them to their coverage requirements. There needs to be more recognition of the unique nature of the situation, not a one-size fits all "rule". Fail.
What I've just outlined is just the tip of the iceberg. It doesn't get the visibility it needs because there's no central forum to put or share our individual experiences. As a result, the prevailing sense that companies are supporting trans people by covering trans wellness procedures to the point needed to achieve a 100 score on the CEI is all anyone has to go by. The real-life, dangerous, health issues under that facade don't get the awareness that they need in order to change them.
I just experienced this first hand. The procedures I needed were denied on the Friday before they were scheduled to happen the following Tuesday. It was due to an emergency peer-to-peer discussion between the surgeon and a doctor for the insurance company that ONLY A PORTION of what we needed to do was approved. Despite what this surgery was going to do the insurance coverage would only cover it as an "outpatient" procedure so I had to check out of the hospital within 24 hours. The fact that it happened at all was testament to heroic intervention that I don't think all of us have.
This is the beginning of this conversation. I plan to make it my mission to get more data, to get more real-life stories, and to bring what we NEED to bear on what we're getting. I don't care about political climate, what's happening in our government, or anything outside the context of bringing more visibility and information to these issues the same as we did when we originally started. Without shedding light on it, it won't just change by itself. And I daresay that more brothers and sisters will die either from lack of care, bad care, or refusal to seek care.
We can't allow that to keep happening....