tim: Tim with short hair, smiling, wearing a black jacket over a white T-shirt (Default)
The following question was posted on a closed support group that I read on Facebook:
I'm applying for residency to become a family medicine doc. Chronic pain and illness is a huge part of taking care of patients, and I want to know your opinion on your healthcare experience. What did you like/dislike/need/receive/not receive from the healthcare field. What is a small thing that would have made a big difference? How can I become a great doctor for my patients? How can I teach others/emulate behaviors for others to become better doctors? Thank you!

I'm copying my reply here to save it for posterity:
I would love it if more doctors understood Health at Every Size (HAES) - specifically, the role of weight stigma, largely inflicted by the medical profession, as a barrier to health care and cause of stress-induced illness and shorter lives for many fat people. It would be great if they understood it comprehensively, but even if they just understood that there is no evidence that intentional weight loss improves health outcomes, that would be great.

Understanding that trans people are biologically the sex that we affirm ourselves to be would be great.

Understanding that the boundary between physical and mental illness is political, not scientific, would be great, as well as the role of abuse culture manifested through childhood trauma in causing both, and how widespread PTSD and CPTSD really are.

If you haven't, read everything by Paul Farmer that you can (especially _Infections and Inequalities_ and _Pathologies of Power_.)

Finally, I wish more doctors would treat a patient who does their own research on their own condition the way they'd treat a student they were mentoring, rather than shaming such patients for 'going on the Internet'.


If you have anything else to add, I'll try to pass it on to the person who asked, as best I can!
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: protest sign: "Down With This Sort of Thing" (politics)
Today I stumbled upon "Categorical Exclusions: Exploring Legal Responses to Health Care Discrimination Against Transsexuals" [PDF], a 2002 article in the Columbia Journal of Gender and Law by Kari E. Hong. In my opinion, the most interesting point Hong raises in her discussion of how American law enshrines anti-trans discrimination is about the Americans with Disabilities Act (ADA).

Is being trans a disability? Arguably so, under the ADA's definition of "disability":

"(1) a physical or mental impairment that substantially limits one or more of the major life activities . . .; (2) a record of such impairment; or (3) being regarded as having such an impairment."


Even from the perspective of trans activists who believe the only unpleasant thing about being trans is the marginalization that we experience by cisnormative society (a perspective I don't share), being trans qualifies under clause (3): even trans people who don't believe they have a medical condition, don't believe that "gender dysphoria" or "gender identity disorder" are real things, and don't feel they require medical intervention are regarded as "impaired" by others. Under one definition, being trans means to have one's gender and/or sex not universally recognized as valid. That means that you are regarded as impaired in an area of life that most people consider essential (having a gender and sex that are concordant and unambiguous). So at least by the ADA's standards, being trans is a disability. I don't have a problem with that, since I don't feel the need to perpetuate ableism by holding myself as superior to and apart from people who have disabilities.

Since the ADA makes it illegal for health insurance companies (as well as health care providers) to discriminate on the basis of disability, you might wonder why a significant majority of group health insurance plans in the US (and every individual health insurance plan that I know of) have specific trans exclusion clauses in their policies, which exclude coverage for what is usually -- crudely and non-clinically -- referred to as "sex transformation" or "sex changes". Actually, these clauses exclude coverage for a variety of reconstructive surgeries (mostly on the genitals, chest, or face) when trans people are having them. Often, the policy covers the very same reconstructive surgery for cis people that's excluded for trans people: for example, breast reconstruction for cis women who have had mastectomies due to breast cancer is covered (this is required by federal law), while breast reconstruction for trans women is not.

So according to the ADA, isn't this blatantly illegal discrimination? Well, no, and for that, you can thank Republican senators (at the time) William Armstrong, Orrin Hatch, and Jesse Helms, all of who were involved in introducing a heinous amendment to the ADA:

At the end of the bill, add the following:

Under this act the term `disability' does not include `homosexuality,' `bisexuality,' `transvestism,' `pedophilia,' `transsexualism,' `exhibitionism,' `voyeurism,' `compulsive gambling,' `kleptomania,' or `pyromania,' `gender identity disorders,' current `psychoactive substance use disorders,' current `'psychoactive substance-induced organic mental disorders,' as defined by DSM-III-R which are not the result of medical treatment, or other sexual behavior disorders.'


If you read Hong's article, you can find some of the despicable things that Armstrong and Helms said on the Senate floor that led to the introduction of this amendment. As Hong points out, Armstrong and Helms made no attempt to hide that their antipathy for trans people, pyromaniacs, drug users, and so on had nothing to do with evidence or medical science. I can't help thinking about much more recent controversies over Republicans like Todd Akin, who also made medical claims (that cis women who experience rape can't become pregnant) that are completely contradicted by fact. It's hard not to think that there not only hasn't been progress in the past quarter-century, but that we've gone backwards. While Armstrong's and Helms' ignorant statements could maybe, maybe be excused by the lack of widespread knowledge about and experience with trans people, Akin lacked that excuse for his asinine statements about pregnancy -- not a marginal condition, but one experienced by up to half the human population.

Because nobody in the Senate really gave a shit about trans people (not that I have any reason to think that's changed), the Armstrong-Hatch amendment passed, and continues to be law today. There are other legal bases on which somebody who was denied insurance coverage just for being trans could challenge that decision, but without some significant effort to show that the Armstrong-Hatch amendment violates the Equal Protection clause of the Constitution, the ADA won't be one of them. Then again, it does violate the Equal Protection clause, so you'd think someone would get on that.

Hong's article is ten years old; since then, I've seen very little other writing that explored a potential ADA-based challenge to trans exclusion. Recently, groups like the National Center for Transgender Equality and the Transgender Law Center, as well as writers like Melissa Harris-Perry, have lauded how the Affordable Care Act (ACA) adds additional legal protections for trans people facing health care discrimination. However, I find these celebrations to be premature and totally misleading and harmful, since the ACA in no way addresses the core issue that trans people can be denied medical care that cis people get with no obstacles, simply because we belong to a socially stigmatized group. So long as social stigma affects the kind of health care I can access more than medical necessity does, I won't be celebrating.

Postscript: There's one thing I think Hong is totally off-base about: her assertion that trans kids shouldn't receive medical treatment. If her opinion were policy, at least one person I know probably wouldn't be alive today, and that would be bad, since I prefer her to be around. She seems to confuse reparative therapy for trans kids as practiced by Ken Zucker and supported by his pals entourage Ray Blanchard and J. Michael Bailey, cheerled by Anne Lawrence and Alice Domurat Dreger -- something that is absolutely harmful and unethical -- with treating trans kids by letting them be the gender they are. These two modalities are about as similar as antifreeze and ginger ale, but Hong seems to fall for the harmful misconception (allow me: cisconception?) that medical treatment for trans kids amounts to forcing gender roles on them. That couldn't be further from the truth, since denying medical treatment is an attempt to force a gender role on a trans child: the gender role the child was arbitrarily and coercively assigned at birth. When it comes to adults, though, I find Hong's arguments pretty sound (aside from some of the language -- like the self-contradictory phrase "biological gender" -- which reflects the standards of the time).

propaganda

Oct. 12th, 2009 08:41 am
tim: Tim with short hair, smiling, wearing a black jacket over a white T-shirt (Default)
So there's a meme going around that it's not doctors or hospitals (you know, the ones who get richer by providing unnecessary care), but rather, patients who are to blame for the rising cost of health care, because they demand too much medical treatment.

Do you think so? Have you ever demanded care that was above and beyond what you needed? Have you known anyone who went out and got health care just for fun?

Or could it be that convincing people to blame themselves is a powerfully politically disempowering tactic?

I'm listening to an NPR program at the moment talking about how things would be better if people would just trust their doctors, who are currently cowed into submission giving patients the unnecessary and potentially harmful care they demand because insurance won't reimburse them for spending extra time explaining to the patients that it's not necessary, and due to fear of malpractice suits.

But why should you trust someone who puts their fear of losing money ahead of your welfare?
tim: Tim with short hair, smiling, wearing a black jacket over a white T-shirt (Default)
I am *so* *fucking* *tired* of what passes for health care debate that assumes the problem is any or all of:
1. rich people (i.e. people like you, the person reading this, and me, the person posting this on a taxpayer-sponsored computer) have to pay too much for health care
2. rich people spend too much on health care
3. other organizations spend too much on health care on behalf of rich people
4. rich people sometimes spend 3 months not having health care when they change jobs

The problem actually is:
5. poor people die of asthma attacks because they can't afford preventive care,

you idiots.

And no, (5) is not a direct consequence of (1) through (4), because the problem isn't that the pie isn't big enough for everybody, or that some people are bigger eaters than others; the problem is that most people find it convenient to throw extra pie in the trash rather than giving it to people who don't have any.
tim: Tim with short hair, smiling, wearing a black jacket over a white T-shirt (Default)
Last summer I had occasion to receive some medical care at the Portland Clinic (and was misdiagnosed in a way that suggested vast incompetence on the part of the doctor I saw there, but that's an entirely different story). To this date, I've still been getting bills from them for an amount less than what my insurance company says they paid them.

Today I finally figured out why: Blue Cross (which was my insurer at the time) made several payments to the Portland Clinic towards my bill and would have made a third one, but the Portland Clinic owed them money in exchange for Blue Cross having overpaid for other patients. So in return, Blue Cross never paid them for my claim, but deducted it from the Portland Clinic's debt to Blue Cross instead (this is apparently called a "punch credit").

In multiple phone calls to the Portland Clinic, they never mentioned to me that this happened, but have continued to bill me for the amount that Blue Cross deducted as a punch credit. That's fraud, kids!

Blue Cross doesn't deserve much credit either, because it's taken about ten hours on the phone with them over a period of six months for me to finally get them to tell me what happened. But at least they aren't committing outright fraud.

Obviously, whatever state board regulates such things will hear about this once I finally get the story straightened out.

And obviously, that this ever became my problem is just one minor symptom of the raging disease that is a for-profit health care system.

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

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