(A man plans and God laughs – old Yiddish proverb.)
Today Eli is going in for top surgery – basically a double mastectomy in order to eliminate the main source of his dysphoria. Transgender males who have had top surgery universally report marked decreases in the depression, anxiety, and self-harming that come with gender dysphoria. Accordingly, we could not be more thrilled about this surgery.
Of course, if you told me 15 months ago that my daughter would be undergoing a double mastectomy, I probably would have reeled in horror – and that is an understatement. A mensch tracht un Gott lacht.
We’ve come a long way in the 15 months since Eli told us that we have had his gender wrong all these years. Eli has come out publicly and has taken us with him. We’ve gotten the schools on board. We met a bunch of wonderful families with transgender kids. I’ve learned that the laws meant to make sure that Eli is treated like any other human being are woefully inadequate, even in super-liberal Massachusetts. I have met the Governor to tell him this and find out what he planned to do about it. (Nothing, apparently.) Eli became the first transgender member of a Boy Scout Troop in the Knox Trail Council (and likely all of MA). We formally changed Eli’s name in Probate Court. I attended a public hearing at the State House, listened to a friend of mine make the case for our transgender kids to have the same rights as any other people in public, and met the terrific Rep. Joe Kennedy – a mensch if I ever met one. I got involved with Mass Freedom and the wonderful – and dignified – young people fighting for their human rights in the face of knee-jerk aversion, misunderstanding, ignorance, and outright bigotry. Eli began taking testosterone and within a few months acquired the voice of a pubescent boy.
And, along with all of that, I learned to fight claim denials from my insurer.
By September of last year, we knew that top surgery was not something that could wait very long. Eli’s breasts were the cause of his traumatic body image. (If we had known he is transgender earlier, before the breasts grew, we would have given him puberty blockers. Alas.) In order for Eli to function, to go to school and just be around people and himself, he had to wear a binder, which press his breasts against his chest so as to give the appearance of a flat chest. I liken these things to medieval torture devices. He can only wear one of these for about 8 hours a day – any longer, and there is a risk of real physical harm. And in fact, we have documented 4 trips to the hospital for bruised ribs as a result of wearing these devices. This was clearly an unsustainable situation and out doctors agreed outright.
We consulted with a doctor who specialized in these surgeries. The doctor and staff were very nice and went over all of things we could expect, including the cost of the surgery if we could not get insurance coverage. Gulp. The doctor would put a claim into the insurer and we were going to see what happened from there. There was an understanding that we could get rejected and then we would keep the doctor in the loop about what we planned to do from there.
Now, our insurer, Harvard-Pilgrim, provides coverage for gender reassignment surgeries. The catch is that the coverage is only for those 18 years and older. Eli of course at the time was 14 and a few months. So clearly we were going to be rejected outright. I called H-P and explained them our situation and they told me that our claim would be denied. However, they would then enter us into an appeal process where our situation would first be looked at by an internal committee and, failing that, be evaluated by a third party. It would help if we got documentation from Eli’s medical providers explaining why this surgery was needed now.
We got supportive letters from Eli’s primary care physician (who saw the bruises), Eli’s mental health counselor, and the psychologist and physician at the GeMS clinic in Boston – the specialists who deal exclusively in gender issues from a medical perspective. I also wrote one that detailed Eli’s daily suffering. We also submitted times and dates of the hospital visits as well as the hospitalization for self-harming. I thought that any third party would look at this and be convinced of our case.
I was of course wrong and both the internal committee and the third party denied us. However, I don’t think this third party really looked at our case in depth. The reason for the denial was, again, the age. However, I saw that he got certain facts wrong like, for example, how long Eli has been on testosterone. (Much longer than he claimed.) He seemed dismissive of the evidence of suffering. Not good.
Nevertheless, I was told that I had a choice: either go to the state commissioner of insurance or go in front of an appeal board to tell our story. The former course of action would put us in a state of conflict and would close off any other options. So the appeal board it was. Problem was that, by now it was November and the next meeting at which I could speak would be the following February. Grand.
Prior to this meeting, I consulted with Dr, Norman Spack, the founder of the GeMS clinic about how to go about convincing the insurance company of our case. Dr. Spack helpfully gave me scientific literature and told me to continue to stress the suffering in a way to which the very educated board members could relate. I further reviewed all of the reasoning behind the denial and made sure I could recite details of Eli’s case cold.
The appeal board consisted of eight people, five of whom would vote. The people came from all walks of life: physicians, mental health professionals, a professor, and attorneys. During the meeting, I told Eli’s story pretty much as I did above. I feared that they would thank me and that would be that. But what happened next astounded me: I got questions from most of the board. People were interested in the evidence I presented (thanks to Dr. Spack) that younger kids do benefit from top surgery. Further, for the first time, I understood the insurer’s reluctance to approve the claim: they want to make sure that Eli won’t backpedal and regret the surgery. Here I made what I thought was my strongest case: I said that, yes, there is always a risk of this happening, but I have to weigh that risk against the much greater and more likely risk that Eli will suffer real, irreversible harm either due to the binders or due to self-inflicted injury.
I had a good feeling after they requested that I fax over the papers and get another letter from the GeMS clinic. (Apparently, the original letter from our providers there didn’t answer their questions fully. Huh.) And, sure enough, 10 days after the meeting, I got the good news that the surgery was approved!
I was on Cloud Nine of course…but then reality hit. Everything we have done up until today has been reversible. Now, this is permanent. No going back. I admit to being a little nervous about this as is Laura. But I know of no other way to help Eli feel able to function day-to-day without risking his health. I have high hopes after today that eventually, after he gets through the long recovery process, that he will truly be himself. I have so many people to thank for this, including all of you who have provided support and love since we have come out. We are so lucky that our boy has gone through his transition relatively smoothly. As for his parents…A mensch tracht un Gott lacht.