Having surgery, or fighting the good fight
I just got off the phone with an attorney, Joanne, who is interested in working with me to fight for insurance coverage for my upcoming vaginoplasty. She said that there seems to be some realistic possibility of getting a judge to agree that ICHIP (the state-run insurance pool I’m a part of) should be required to pay for the medically legitimate surgery I’ll be undergoing. She’s not licensed to practice in Illinois, though, so she’s reaching out to some people who are.
We also had a larger discussion about tactics, one which left me with a lot to think about.
So. In 2014, a bunch of additional provisions of the Affordable Care Act go into effect. Arguably, 2014 brings all the good stuff: a health insurance exchange marketplace, eliminations on pre-existing condition exclusions or annual coverage caps, and more. The two parts that Joanne brought up were the insurance exchange and the non-discrimination language in the ACA. The non-discrimination language is the more legal part. Basically, one part of the ACA mandates non-discrimination against LGBT folks. Another part says that insurance companies are nevertheless not required to provide gender reassignment surgery. These seem to be in conflict, and Joanne thinks there’s a good change that the latter will – eventually – be struck down by a judge, on the basis of the former. Trying to take advantage of this wouldn’t require me to change insurance providers, but would require me bumping my surgery back to 2014.
Also up in the air is how the insurance exchange will play out. The ACA mandates the existence of consumer operated and oriented providers, (CO-OPs) owned by their customers. It seems like, if any insurance company would provide inclusive trans coverage, it would be one of those. Of all of these tactics to get insurance to pay for surgery – staying with ICHIP and fighting now, pushing into 2014 and fighting then, or trying to find a trans-inclusive insurance company in 2014 – Joanne seemed to think that waiting for the CO-OPs was the least risky, in terms of time and money. It would, however, require me canceling my surgery in December, 2013 (and presumably loosing my $1,000 deposit) and going waiting, fingers crossed, for the unknowns of the insurance exchange to play out.
There obviously isn’t a right or wrong decision here, but my thinking is complicated by a few things. First, my desire to Fight the Good Fight. I will always be frustrated that my attempts to battle Neal Math and Science Academy (the school which fired me) petered out into nothing. (The final say was that, from a legal perspective, it’s entirely possible they discriminated against me, but I can’t prove it.) I love a good, righteous battle, and fighting for insurance coverage seems like it could be one. But if the ACA is going to change things anyway, it seems potentially counterproductive to put time and energy into battling ICHIP under state law, whether or not I think they’re violating it. (HINT: I do.) And, ignoring legal battles entirely, is it worth waiting until the insurance exchange for the chance at getting things covered without any fight at all?
As I see it, I have three main options:
- Do what I’m doing, with the December 2013 surgery date. Stay with ICHIP, try and appeal their verdict, and go from there.
- LIKELIHOOD OF SUCCESS: Slim, but not zero.
- Push the surgery into early 2014, but stay with ICHIP. I’d still have the surgery and they try to fight them under the ACA provisions.
- LIKELIHOOD OF SUCCESS: A little better, still not great.
- Cancel the surgery, wait for the insurance exchange. This throws any timeline out the window, but – presumably – would mean I could have surgery in mid/late 2014. Maybe.
- LIKELIHOOD OF SUCCESS: Solid, but no guarantee. Also, no real timeline.
I don’t like changing a plan once I have something in place. December 9, 2013, makes sense for me in terms of the rest of my life. I want to have this surgery done, and I don’t want to wait any longer than I have to. And I’ve been raising money for it.
The fundraiser throws things into a different light. What is my responsibility to my backers? From a purely literal standpoint, my responsibility is to have the surgery in December of 2013. That’s what I’ve said I’m doing, and that’s what people donated to. But my responsibility actually seems to be “do what’s best, and have the surgery in the best possible way.” This isn’t a Kickstarter project. (And, even if it were, delays are common.) I don’t realistically expect anyone to complain if I move the surgery date and have a good explanation for doing so.
But if I’m making myself into a public figure, an artist, an activist, do I have any responsibility in that regard to try and put myself out there as much as possible? To take every step I can for the trans community? I feel silly writing it that way, but that is honestly a worry of mine. I love the work I’ve been doing as an artist, an educator, and an activist. I try to conduct myself with forethought and intentionality. How does that factor into things, if at all?
Emotionally, I want to keep the surgery in December 2013. As some friends have pointed out, I am not the only person to try and fight this fight; there have been others before me and there will be others after. But that regret over the Neal firing, and being relatively impotent at fighting it, has stuck with me. If I don’t do this, I know I’ll be at least a little jealous of whomever eventually does; I would love to be able to make a stand around surgery. For all that, the unknown scares me. If someone could definitively say “You will fight this and have surgery by $DATE. Can’t promise you’re going to win, but the surgery will happen within $TIMELINE.” But right now everything is full of maybes: you might be able to fight this, you might win, it might impact surgery dates, you might fail, might, might, might.
I also need to do what’s best for me. As I said, I want this surgery. I’m only waiting until December (as opposed to, say, now) because of scheduling commitments I don’t want to back out of. It would be incredibly frustrating to wait a month, six months, a year, however long, after getting myself geared up for December 2013. But would the wait be worth it? I can’t know.
But right now I’m leaning toward no, it wouldn’t be worth it to wait. Which hurts, for a number of reasons, but at least is honest.
Themocracy
Your only responsibility is to yourself. That being said, GRS is very expensive and if you could wait 6 months to a year and have it mostly paid for by an insurance company, you could have that money for other things. I believe all your supporters care about is your happiness and if you will be happy waiting and fighting the good fight, I don’t see the problem. Plus, lawyers cost money as well.
Speaking from experience, I wanted it done sooner than later because every day it wasn’t done was a struggle. I wouldn’t wait… but I know if I had the possibility of insurance coverage, my spouse would have demanded it. It’s a lot of money.
Do what’s best for you.
Yep, your responsibility is to yourself. Do what’s good for you and your health. As a backer, I certainly wouldn’t object to you waiting– the money will help you when it helps you, and it’s not like insurance covers everything at the best of times.
But I don’t think you need to postpone a surgery that you have determined is necessary for your wellbeing (and that’s one of the reasons insurance should cover it, no?) in order to be a good activist or something. And I know an uncertain future for something like that would not be good for my mental wellbeing, personally.
As Natasha said, do what’s best for you. There are lots of ways you could do activism around insurance coverage– you could certainly do a piece about the cost of surgery sans insurance, etc.