tim: Mike Slackernerny thinking "Scientific progress never smelled better" (science)
So I'm going to possibly-overshare some medical stuff for the benefit of other people, possibly you, because they are problems ranging from simple to complicated but for which there are some fairly easy solutions that it took me -- in some cases -- decades to find out about. Maybe I can save you some time here!

  • Hypertrophic or keloid scars can be drastically reduced in size -- even years after the scars formed -- by what's basically massage (though kind of a painful form of it) from a trained practitioner (including but not limited to some physical therapists). This applies to scars from surgery, and possibly other kinds.

    What doctors said about it: you can get surgery to reduce scars but the surgery, of course, causes more scarring so really, what's the point? Also, something about radiation therapy. But no mention of manual work.

    Who actually helped: a physical therapist, to whom I was referred by a nurse practitioner.
  • If you have occasional sporadic trouble inhaling, and have ruled out asthma, it may be something called "self-limiting dyspnea". At least for me, this is pretty clearly due to learned behavior related to CPTSD (a detailed explanation). The good news is, that at least for me, three sessions of behavioral therapy pretty much reversed what literally amounts to 30 years of breathing the wrong way (where "wrong" is defined here as a way that doesn't give me enough oxygen), as well as a problem with nasal breathing that I'd previously thought was due to allergies and/or permanent swelling from allergies.

    What doctors said about it: maybe it's asthma? Or maybe it's nothing? Who knows, really; or, we'll do some sinus surgery [which, to be fair, helped somewhat, but maybe they should have asked about the behavioral stuff first] and then shoot radio waves at your turbinates and that won't really work.

    Who actually helped: a speech therapist, to whom I was referred by (to be fair) a doctor, but only after having 4 or 5 other doctors brush me off.
  • Pelvic pain can mimic a constant UTI, even if you don't notice pain at times when you're not trying to pee, and not noticing pain may also be a CPTSD issue, as well as the underlying pain itself. Physical therapy can help with this a surprising amount.

    What doctors said about it: here, try these meds. They don't work, oh? How about these ones instead. Well, those don't work either? There doesn't seem to be anything mechanically wrong with you, so that's a dilly of a pickle.

    Who actually helped: same physical therapist as with #1.
  • IBS has many causes (and is related to the previous point in some cases), but one cause is subsequent to a bacterial infection. (I had giardia. In Portland, not after going camping or anything like that. I'm going to just blame the city and their lack of willingness to put anything in the water.) This can go on for years and years and years. At least for some people, including me, a one-week course of antibiotics can fix it completely (except for lasting lactose intolerance, which may be genetic but may have been caused by messed-up gut flora, who knows?)

    What doctors said about it: You have Crohn's Disease! [a month later, after getting a second opinion] Oh, wait, you don't have Crohn's at all, whoops. It's "just IBS", so, reduce stress in your life, because that's easy to do? Or how about let's do another colonoscopy and find nothing. Or... hmm, we could do this lactulose breath test, but it has a lot of false positives. Well, you're positive, but we'll wait 3 months to call you back and tell you that, and anyway, maybe it's a false positive, but you can try these antibiotics anyway if you want. Oh, they worked? Cool.

    Who actually helped: a doctor. So to be fair, they're helpful occasionally, but this was literally the 4th gastroenterologist I saw.
  • Hypothyroidism is massively underdiagnosed because even now, labs' "normal" ranges for thyroid tests are determined from a population including many people with undiagnosed thyroid issues.

    What doctors said about it: "Your thyroid is normal" [while declining to state numbers, and I didn't know to ask]. "Lose weight." (never mind that, even if intentional weight loss was desirable, a nonfunctioning thyroid takes that from "probably impossible" into "definitely impossible" territory.)

    Who actually helped: also a doctor, to be fair, but only after having to be very pushy about asking for an antithyroid antibody test (not all hypothyroidism is autoimmune, but in the cases where it is, the antibody test has no false positives to speak of, AFAIK). Also, myself by pushing every doctor I've seen since then to prescribe me enough meds to keep my TSH below 1 (and resisting the gaslighting some doctors do about how I'll get hyperthyroid -- something I've never experienced in my life -- or how I'll get heart problems -- which even if that happens in years, I'd rather be able to stay awake for 8 hours at a stretch now).
  • If you feel that you are "clumsy", especially if that's because people have been calling you that since you were about four, it may actually be because you're (subconsciously, without awareness) tensing all of your muscles all the time because of CPTSD, which in turn makes it hard to move.

    What doctors said: I never thought to ask, because I just blamed myself for being broken.

    Who actually helped: Nobody, yet; still figuring this one out (though it's related to some of the others).
  • Sleep apnea and (C)PTSD are related. After dealing with the aforementioned breathing issues, I was able to switch back from a full-face mask to a nasal mask on my BiPAP (a form of CPAP). (Full-face masks are unpleasant for me because they make my mouth drier, even when using a heated humidifier that's integrated into the machine and a room humidifier (also I live in a desert), and then I wake up, which defeats the purpose of CPAP.)

    What doctors said about it: when I asked if there was anything better than CPAP out there, these days: "In your dreams, homeboy."

    Who actually helped: I figured this out on my own after #2 happened.

This post could be summarized as: Why, Even Though I've Been Thinking For Years About Maybe Going to Medical School, I'm Now More Interested in Becoming a Nurse Practitioner. In any case, I am not a medical professional so this is all just me sharing my experience with no guarantee that any of it will work for, or be relevant to you, even if you happen to have some of the same issues. It's a little like the GPL.
tim: "System Status: Degraded" (degraded)
Close readers of this journal know that after I had genital reconstruction surgery in February 2012, I experienced complications that required an emergency room visit. Everything was fine in the end with regard to my health and body, but with regard to my finances, not so much.

As far as background, from January-March 2012, I was employed by Mozilla as a seasonal employee (nope, I didn't know software engineers could be seasonal employees either) which meant I wasn't eligible for any benefits, including health insurance. To be a responsible adult, I purchased an individual health insurance plan from HCC, which I found through ehealthinsurance.com. HCC was one of the few individual short-term plans that offered instant approval, which means not asking the detailed health questions that most short-term insurance companies asked. I know from experience that I would be denied insurance by any company that asks detailed health questions, so I had to go with one that offered instant approval. I was hired by Mozilla at the end of that period as a full-time employee with benefits, so I have group health insurance now, but of course it doesn't apply retroactively.

While I was interning at Mozilla but before I decided to (/was forced to) leave grad school, I made plans to have surgery in Feb. 2012. Of course, I didn't think that any individual health insurance plan that I would have would cover the costs, so I intended to pay for the surgery via credit cards, and that's what I did. And if not for what happened after my first surgery, I'd have paid off those credit cards by now.

Infections can happen with any surgery, and I got to be one of the unlucky ones; after returning from Arizona to Oakland, about ten days after having surgery, I got a high fever and other flu-like symptoms. I wrote it off as probably a cold or flu at first, but it didn't get better as quickly as flu would have, and a few days later I made an appointment with my primary care doctor for advice. Just before I left for the doctor's appointment, I felt something wet and noticed that one of my incisions had burst open and was bleeding. I shoved some gauze in my pants and headed to the doctor; she advised me to go to the ER, since I needed a plastic surgeon and that would be the only way to get in to see one on short notice. I ended up staying at UCSF for that night and the next night, and had emergency surgery to stop the bleeding, which was due to a buildup of fluid from the infection. Again, after that, I got better and everything was fine... except for the bills.

When I went to the ER, I provided my health insurance information, knowing my insurance probably wouldn't pay, but I figured it couldn't hurt. And in fact, I was reluctant to go to the ER in the first place, even after the uncontrollable bleeding started. Think about that for a minute. How fucked up is it that I thought about treating unstoppable bleeding at home just because going to the hospital would accrue bills I wouldn't be able to pay?

Well, a few months later the unsurprising thing happened and I got a letter from HCC denying all my claims -- for a total of around $35,000 of costs that were my responsibility (between the hospital bills, anesthesiologist bills, and physician bills). They cited a clause in their policy that states that "Treatment required as a result of complications or consequences of a treatment or condition not covered under this certificate" is excluded under the policy. Moreover, there's another clause, that, similar to many other insurers' trans exclusion clauses, states that "Modifications of the physical body in order to improve the psychological, mental or emotional well-being of the Covered Person, such as sex-change surgery" are excluded. (As an exercise for the reader, you can think of all the things that are wrong or misleading about this sentence.)

In my opinion, HCC's denial of coverage was based on a correct application of the policy, but I believed that the policy itself was discriminatory. It singles out people in a protected class (trans people, as per California's Unruh Civil Rights Act) for poor treatment, as evinced by the use of the non-clinical term "sex-change surgery" to refer to genital reconstruction surgery and other procedures. The medical community agrees that for trans people who require surgery and/or hormones, those transition-related procedures are medically necessary -- not just desirable to improve "psychological, mental, or emotional well-being" (though, like almost any surgery, transition-related surgeries could certainly do that as a side effect -- not being in pain is more fun than being in pain, as a general rule). There is no controversy about that. So the only reason to single out trans people for denial of health care is to take advantage of public animus towards trans people; I'm not saying that executives at HCC necessarily hate trans people, but they know we're politically unpopular and that there will be no broad outcry against denying us care. A health insurance company's job is to stop people from getting health care, so the more unpopular groups they can identify and deny care to, the better they're doing their job.

I wrote a 4-page appeal letter elaborating on this point (and on other issues) and sent it to HCC in September of last year. After about a dozen phone calls and a few more letters sent to HCC, spread out over a few months (every time I called, I was told that the call center employee "didn't have permission to view [my] file"), I filed a complaint with the California Department of Insurance. Miraculously, within a week, I received a UPS next-day-air letter from HCC affirming the denial of my claim. The majority of the letter doesn't deserve the dignity of a response, but the key point is at the end: because HCC is licensed in Missouri, the letter states, they are not subject to California civil rights law -- even though they took advantage of the benefits of doing business in California by selling policies to me and other California residents.

I couldn't believe that this could be true, and I called back the person I'd interacted with at the Department of Insurance. She affirmed that this was true -- saying that in almost all cases, any health insurance company that is regulated in California and allowed to sell policies in California would be subject to California civil rights law, HCC fell into an exception for "health and life insurance companies". Because HCC sells both health and life insurance policies, they are allowed to sell insurance in California but don't have to comply with California law. Rather, they're subject to the laws of Missouri, which has no civil rights protection for trans people.

Something still didn't sit right with me about this answer, so I thought about finding a lawyer to get advice. But, I had already tried to do that:

  • I talked to a friend who works at the National Center for Lesbian Rights, and he talked to a colleague of his who works at the Transgender Law Center. It appeared that the policy of both groups is not to sue health insurance companies for anti-trans discrimination, because challenging trans exclusion under civil rights law is something that has never been successful.
  • I talked to somebody at the Transgender Legal Defense and Education Fund, and while he spoke with me at length, in the end he said that they weren't willing to take the case because they don't handle cases where a company has an explicit trans exclusion clause; they would only challenge it if an insurer was denying coverage for transition-related care but didn't have a trans exclusion clause in their policy.
  • I spoke directly with an advocate at the Transgender Law Center and sent him a copy of my appeal letter before sending it to HCC, but never received a follow-up response.
  • I called the offices of Christopher Dolan, a lawyer who has done some LGBT civil rights cases, but after receiving an intake interview from a staff member, was told that they would not take my case.
  • Another friend of mine who's a lawyer recommended a lawyer known as the best client-side health insurance lawyer in California, and I called his office, but he never returned my call.
  • I called the San Francisco Bar Association referral service; they took my information over the phone, then called back a few days later and told me they weren't going to refer me to anybody.
  • I called my work's employee assistance program; they referred me to a lawyer who talked to me for 15 or 20 minutes, told me the case was really interesting and that if he had to file a brief on a related topic he would call me for advice (not what I want to hear from a lawyer, honestly), and to call him back once I received a response to my appeal. A few months later when I got the denial, I did call his office back, and they never returned my call.
  • I called the office of Kari Hong, who wrote the excellent paper "Categorical Exclusions", but she never returned my call (and seems to have moved on to other areas of law anyway).
  • I posted a query on LegalMatch, and got some views but no replies.
  • I called BALIF, the LGBT law association, to ask if they did referrals, and they never called me back.
I think that's everything. The only thing left to do that I can see is to go through BALIF's member directory, which they do have on their web site, and just start calling every lawyer on it. I intended to do this for a while, but I kept putting it off because I just couldn't face the thought of being told by cis people things like "why do you want health insurance to cover your cosmetic surgery?" and of wasting a lot of time on something not likely to produce results. So at this point, I'm admitting defeat. I have about $11,000 left to pay off to UCSF that I'm paying at an installment rate of $1000 a month; between that, student loans, paying off my credit card debt that's mostly from the original surgery and the revisions that I needed (though that's almost all paid off now), and the high cost of rent in the Bay Area, it'll still be at least a year before I get to see much of my paycheck. It'll be more than a year before I get to start saving for retirement. When all this is over, I'll have spent my first three years out of grad school -- after already getting a late start and leaving without a degree -- completely unable to save any money, almost entirely because of medical costs that would have been covered by insurance if I wasn't part of a socially stigmatized group. I could have saved that money for retirement, put it towards a down payment for a house, saved it towards being able to have a family one day, any number of things... but other people got to take it from me simply because I'm trans.

My understanding is that trans civil rights groups (and there are very few civil rights groups to begin with that defend trans people's rights) prefer not to pursue cases like mine because they think it's a better strategy to work with employers to lift clauses in their policies, on a company-by-company basis. I see this as a trickle-down approach to social justice, and like most trickle-down approaches, it benefits those people who are already the most privileged. The solution proposed is for everyone to just get a job at Google so they can have trans-inclusive insurance... but what if you're in a class of people who can't just get a job at Google? Oh, well. I'm personally in that category of the lucky few who have job options that come with trans-inclusive group health insurance, but my company still has trans-exclusive insurance (and, of course, due to the specifics of how I was hired, I wasn't even covered by their insurance when my emergency happened). And I like working at my company, and don't want to take a different job just for the health insurance.

Before all this happened, I thought that all it would take to challenge trans exclusion clauses would be for someone to be willing to be a test case, so long as they lived in a state that had trans civil rights protections. Well, now I see that I was wrong. I would have been happy to be a test case, since I don't particularly care about getting negative publicity (being a trans man, I would be unlikely to face the same kinds of negative consquences as a trans woman who outed herself publicly as being trans), but that didn't matter, since no one was interested in representing me.

And, of course, it's possible that even the world's best lawyer couldn't have won my case because of the health-and-life-insurance company loophole. I don't know enough about insurance law to know. That's why I wanted to hire an insurance lawyer. The individual health care policy industry seems to be a particularly unethical and exploitive corner of a morally bankrupt industry. And this is a good time for me to acknowledge that the basic issue here is the US's for-profit health care system, something found almost no where else in the developed world. If our failure to take care of each other -- even people different from ourselves -- hadn't created an industry whose purpose is to take people's money in order to stop them from getting health care, there would be no incentive for insurance companies to deny care to people in marginalized groups. That said, I think it's possible for different groups of activists to address different problems; we have to fight for a better system at the same time as we work to make the current system less blatantly unfair.

I feel like what I've achieved in my life so far is pretty close to the maximum for what trans people are allowed to accomplish. My lifelong depression has always stopped just short of being suicidal; I have a graduate degree, have never been homeless, and have a stable professional job and a high income. I'm pretty close to the trans ceiling, then -- and a whole lot of that is because I'm a trans person who was coercively assigned female at birth and who presents in a way that people recognize as falling within what men are allowed to do most of the time. I don't want to downplay any of my privilege here. Still, if the best that any trans person can hope to accomplish involves being in major long-term debt, there's a problem, because in that case why should anybody try hard when they're designated as subordinate from the start? Looking at the CNN.com story that featured me along with five trans women, a few months ago, is one way to find further context.

I'm okay with giving up this fight, but I'm not okay with not leaving a public record of what happened, so for posterity, here's my appeal letter in PDF form and here's the response from HCC denying my claim; also, here's the response from the CA Department of Insurance declaring that California has no authority to regulate HCC, also in PDF. For context, you also might want to read all of my previous surgery posts (but, warning: all of them contain explicit body and/or sexuality details about me): first, second, and third.

If you're wondering what you can do:
  • When you get an unsolicited email from a recruiter, ask them if their company has trans-inclusive health insurance, and then post the results here.
  • Find out whether your employer has trans-inclusive health insurance. If not, find out why not and pressure them to change. It's especially important than people who are not trans do this, both because they can do so with less personal risk and because their requests will be taken more seriously.
  • Donate to the TGI Justice Project, which doesn't focus on health insurance but does advocate for the most vulnerable trans people.
(I'll add more ideas if I think of them.)

Edited July 11, 2013 to add letter from CA Department of Insurance
tim: Tim with short hair, smiling, wearing a black jacket over a white T-shirt (Default)
I have an announcement to make that some people may consider TMI and which may be NSFW if text can be NS F your W. In 3 1/2 weeks, I'm having genital reconstructive surgery. I'm a person who doesn't mind sharing details about my body that many would consider rather personal. The concept of TMI has never rang very true for me (in general, I want to know everything about everybody, and it's hard to imagine being squicked by somebody else knowing something about me). However, I also believe in consent, and part of that means not foisting details about my sexuality on anybody before they have the chance to opt out. So if you are someone who plays a role in my life such that knowing very intimate details about me would make you uncomfortable -- or if you just don't care what's going on in and around my crotch -- here's your chance to opt out. Don't follow the link.
For the rest of you... )


tim: Tim with short hair, smiling, wearing a black jacket over a white T-shirt (Default)
Tim Chevalier

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