Before I get to that, I want to clear my tabs in this last post of the year. First, you should read Bob Herbert’s op-ed about the Senate’s plan to fund health care by taxing “Cadillac” insurance plans. I was indifferent to this proposal, but Herbert makes a very good case for why it is wrong, and so I am now against it. We can only hope the mechanism is abandoned in the reconciliation process.

Next, this article from Tony Judt, about what it’s like to live with ALS is striking and moving – and especially resonates when he says, “it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.” I have often thought the same of Crohn’s, and I am sure it’s true of a great many other illnesses.

Lastly, back to Alien: I happened on Dan O’Bannon’s obituary in the NY Times over the holiday. O’Bannon wrote the screenplay for Alien, as well as several other horror and science fiction films. O’Bannon also had Crohn’s disease – in fact, the obit quotes him as saying, “the idead for the the monster in ‘Alien’ originally came from a stomachache I had.” I’ve seen Alien a half-dozen times, and now it makes perfect sense: how I’ve wished the monster gnawing at my guts would just kill me and/or scamper away.

Of course, most doctors will tell you that Crohn’s is incurable but not terminal – so it’s notable that the obit states, “the cause [of death] was Crohn’s disease.” That could mean any number of things, from surgical complications to sepsis to self-assisted euthanasia – there are a lot of ways to die from Crohn’s disease. But the fact that you might identify a proximate cause of death in no way changes the underlying cause of death; so when doctors say Crohn’s isn’t terminal, what they mean is that in theory you could live a normal lifespan, if you can just avoid all the different ways people with Crohn’s disease die prematurely. Props to whomever named Mr. O’Bannon’s cause of death for what it was.

Sad though Mr. O’Bannon’s passing is, I am at least grateful I can finally claim a movie for my disease. People with AIDS have Philadelphia, and people with ALD have Lorenzo’s Oil – but those of us with Crohn’s? We have frickin’ Alien – and that’s a pretty badass movie to have.

That’s it for 2009. See you in the new year.

Just desserts
Related to the previous argument, the “just desserts” argument says that people deserve what they get. [...] By this argument, the outcome of a person’s life is caused by proximal factors (internal factors like character and judgment); less important to outcomes are distal factors (external factors like the structure of society and public policy). By laying the fact that they are uninsured on their own shoulders, conservatives can argue that ” It’s their own fault”.

A minor point: the phrase is more accurately “just deserts“, where “desert” is a word meaning “what one deserves”. Anyway, I’m not convinced of the provenance of this document, though the Kossack in question says it came from The Vanguard.Org. You can find a similar argument used as a straw man in this document from AMSA (.pdf).

Even if not a bonafide conservative talking point, this basic idea is pervasive enough to be trouble. Formally, it’s called the Doctrine of Retribution: the notion that the world is a fundamentally just place, and bad people will be punished. That may well be true, but somehow it gets distorted to also mean that every person who suffers deserves it  – i.e., you’re uninsured because it’s your own fault. This fallacy informs a lot of prejudice and bigotry: you may know it as the idea that black people are poor only because they lack work ethic, or women get raped only if they’re “asking for it” by how they dress. Now we see it being applied to health care…

Like many conservative tropes, this one is drawn from a highly selective reading of the (Hebrew/Christian) Bible: suffering is punishment from God, visited only on those who deserve it. In fact, the progress from the doctrine of retribution to a more compassionate, more sophisticated understanding of human suffering is a major arc of the Bible; by the end of the Christian version, Jesus and Paul erase any notion of retribution as an ordering principle for the universe.

I learned all of this not from church – though I do go – but from “Intro to the Old Testament”, taught by Professor Priest (seriously), a man so old he might have learned the subject matter by first-hand experience. And while teaching us the Doctrine of Retribution, Dr. Priest mentioned that this idea had been the crux of a minor controversy “recently”, and that George Will had written on behalf of his son, who has Down Syndrome. George Will has taken a beating lately for being something of a liar, but I decided he might at one time have been a reasonable man; it took me all morning, but I finally found his column* buried in the Lexis-Nexis archives. ‘Recently’ was a lot further back than I expected: 1985.

In the column, Will quotes a Department of Education official who was arguing against funding education services for mentally handicapped people:

“They (the handicapped) falsely assume that the lottery of life has penalized them at random. This is not so. Nothing comes to an individual that he has not, at some point in his development, summoned. Each of us is responsible for his life situation.” And, “There is no injustice in the universe. As unfair as it may seem, a person’s external circumstances do fit his level of inner spiritual development. . . .”

Bear in mind that this is a Reagan Administration official that Will is quoting; he writes as a conservative, arguing against her mindless prejudice. Will was vehemently opposed to the “just desserts” argument, especially as a rationale for public policy, in part because he has a son with Down Syndrome; of course, Will’s son has done nothing to deserve whatever hardship comes with that condition.

George Will might disagree, but I think something very similar is happening in the health care debate. Going back to the Kos posting: the latent implication of “just desserts”  is that “sick people deserve what they get” – whether that’s adequate health care and a fulfilling life, or a slow and painful death. This prejudice might have been unacceptable in 1985 – the official was forced to resign – but it’s still alive and all-too-common today.

The question of the moment, of course, is whether sick people deserve health care. The “just desserts” argument says they “deserve whatever they get”, thus blaming the sick for sins they did not commit in a world that does not exist. And though most people would not admit as much, I think too many believe in “just desserts” at some level. A person who believes the sick deserve sickness is not someone who can ever support a universal health care system – but only because his opposition is premised on a false understanding of the world.

People want the world to be a just place; it’s hard for them to accept the idea that bad (or good) things happen to the undeserving. It’s much easier for them to assume – if only subconsciously – that sick people have done something to deserve their illness. This is the basic premise behind a lot of faith and spiritualist healing, plus a great many products masquerading as “alternative medicine”. You also see it in arguments that claim – more or less – our health care system would work if only all the fat people would stop being lazy and lose all that weight. If you’re sick, this is why some people make you feel like a ‘leper’; they think you did something to deserve your disease.**

We should recognize this premise for what it is – cruel prejudice against sick people – and do what we can to refute it. George Will and I disagree as to what this means for health care reform, but we might agree that health care reform is problematic enough without “crackpot metaphysics about the perfect justice of the universe”. It’s a massive mistake to base social policy on the assumption that all bad things happen only to people who deserve them.

To me, the fact that bad things happen to good people is an argument for a universal system of health care. It’s not the only argument, and not the best, but it’s among the many good reasons to support universal health care. There are defensible reasons for conservatives to oppose universal health care; the bigotry that sick people deserve their illness is not among them.

(Cake photo from Cake Wrecks)

* Will, George. “My Son and ‘Life’s Lottery’”; Washington Post, April 24, 1985; A25

**Yes, some illnesses and injuries are self-inflicted – but that’s a question of consequence, not desert. Lung cancer is a consequence of smoking, but does a pack-a-day smoker deserve a painful death? AIDS is a consequence of risky sex, but does a drunken one-night stand really merit the suffering that goes with the disease?

Ken Johnson, senior VP for communications at PhRMA, commented:

Billy, like you, was diagnosed with a serious medical condition. He almost died from a rare form of stomach cancer that even his doctor only gave him a 1 percent chance to beat. He celebrated an important milestone this week: He’s been cancer-free now for five years.

Fortunately, both of you continue to beat the odds.

This is fertile ground, I think. I’ll come back to whether or not I “beat the odds” in a later post, but there’s no doubt that Mr. Tauzin did. It’s instructive to look at how that happened – and ask whether his experience was at all typical of American health care.

Mr. Tauzin’s first symptoms appeared in 2003 or so. By then, he had already been in Congress for more than 20 years. Members of Congress enjoy a great health benefits package – the FEBHP. When Mr. Tauzin realized he had a problem, he didn’t have to think twice about getting treated. By his own account:

I was taken to the hospital and was diagnosed with a rare cancer with a poor prognosis: duodenal adenocarcinoma.

The hospital in this case was the Bethesda Naval Medical Center. However good your insurance might be, you probably can’t get into Bethesda: it’s a government hospital run by the Navy, where members of Congress are VIPs.

After getting his diagnosis, Mr. Tauzin went to the Johns Hopkins Medical Center for a second opinion. According to US News, Johns Hopkins is the best hospital in the country, and third-best for cancer. Here’s Mr. Tauzin again:

I went to Johns Hopkins to have a Whipple procedure – and as you know a Whipple procedure is one of the most aggressive types of surgery anyone can endure. [...] The Whipple was supposed to cure me, but unfortunately I found out (at a follow up visit at MD Anderson) that there was still cancer in my body.

MD Anderson is, of course, the best hospital in the country for cancer treatment. At this point, Mr. Tauzin had been to three different hospitals – including two of the top three in the country for cancer. This is not a trivial fact: three years ago, while in the hospital, I was told I had precancerous dysplasia of my colon, and needed to have it removed. I decided to have my operation at a safer and cheaper hospital, but had to fight my insurer for weeks over that decision. I had a hell of a time – I cried, begged, shouted. I know lots of folks with similar experience, but how difficult do you think that kind of thing is for a sitting Congressman? Do you think he cried?

Whatever it took to get him to Houston, the prognosis at MD Anderson was pretty bleak: Mr. Tauzin’s cancer looked to be fatal. The doctor there made a last ditch suggestion:

My doctor reviewed my options with me: I could undergo another surgery, but that would probably kill me and would be unlikely to cure the cancer. They had no approved protocol for people in my position, but there was a drug (called Avastin) that had been successful in treating colon cancer – but was not yet approved for duodenal adenocarcinoma.

[...]

It’s a good thing we tried Avastin because it worked like a miracle. By the end of my first round of chemotherapy, the radiologist couldn’t even find the tumor on my CT scans. It was gone. I completed several courses of chemo and radiation and I’ve been cancer-free for over 5 years now.

I think we can all appreciate his victory over cancer, but Mr. Tauzin is too modest: judging by the best available research, his cure was not “like a miracle”, but in a fact was a miracle. The most positive study done to date found that Avastin prolongs life by only four months, on average, in colo-rectal cancer patients – and five years after Mr. Tauzin’s miracle, it’s still not approved (pdf) for anything but colo-rectal and lung cancers. Moreover, Avastin is very expensive – so much so that it has become the poster drug for comparative effectiveness research, per the NY Times:

The drug’s price, as charged by Genentech, can be $4,000 to more than $9,000 a month, depending on a patient’s weight and the type of cancer. Avastin’s cost to patients and insurers can be much higher, though, because doctors and hospitals buy the drug and then sell it to patients or their insurers, often marking up the price.

The article is full of people denied Avastin, or forced to buy it at great personal expense. I looked at my insurer’s formulary: Avastin isn’t covered for adenocarcinoma. In the past, I have been able to get off-label drugs to treat my Crohn’s from this insurer – but that was Humira, which was on the cusp of FDA approval anyway. At least I know that’s not a typical experience. Do you think his insurer ever said “no” to Mr. Tauzin?

However he got the drug, his treatment and cure – and a $2 million salary – helped Mr. Tauzin realize his calling:

My wife looked at me and said, “You know Billy, you really ought to go to work for the people who saved your life.” I thought, “If there’s a meaning in why I’m alive today – then surely it must be to use my experience to help patients like me across the world.”

So now Mr. Tauzin works for PhRMA, helping patients by lobbying against reform that would ensure their access to cost-effective care. He wants to keep things as they are, because he thinks they work “pretty well“.

Sure, that system worked “pretty well” for Mr. Tauzin. He got the best medical care in the world, thanks to generous insurance, excellent hospitals, expert oncologists, an expensive long-shot drug, and the perks and privileges of being a US Congressman. But that experience is true for only a fraction of  a percent of Americans. I don’t have that kind of care. You probably don’t have that kind of care. The rest of us, we’re the 99% his cancer would kill, and Mr. Tauzin has no idea what that’s like.

My point in this post isn’t to pick on Billy Tauzin. Whatever my disagreements (vehement and thorough) with his political views, I wouldn’t wish near-fatal cancer on anyone. But I think his story shows I am fully correct: Mr. Tauzin’s experience is not that of a typical patient. The idea that he knows what it’s like for the other 99% of us patients – and is therefore entitled to advocate on our behalf – is not just wrong, but patronizing. Like a lot of people talking about patients, Billy Tauzin needs to talk to us before he can talk about us. Or maybe, he could just let us speak for ourselves.

One of the best things about blogging is the people that interact with me here and elsewhere in the blogosphere, and what I learn from them. For example, Joe Wright commented on my post about disease organizations, and points to a response on his own blog. You should read his post – in particular, towards the end where he talks about the 504 sit-ins in 1977. This is the first I had heard of it, but it’s important history to anyone who is disabled or chronically ill. The eventual result of these demonstrations was the Americans with Disabilities Act, and the more recent the ADA Restoration Act which includes those with serious illness under the protections of the original Act. If you have a few minutes, listen to the NPR report on the 25th anniversary of the sit-ins.

In the second part of the report, Paul Longmore makes the point that prior to the sit-in, disabled people understood their disabilities primarily in medical terms;  the obstacles they faced were assumed to be intrinsic to the disability. The sit-in helped people appreciate the extent to which the obstacles they faced were in fact the result of other people’s decisions and actions, and that disabled people could work together to remove those obstacles.

I got into blogging in part because of a similar realization: the biggest limitations in my life are not the clinical features of my disease, but the actions and decisions of others vis that disease. So where other patient bloggers talk about their symptoms, meds, diet, etc, I spend much more time talking about health care reform, patient empowerment, and so on. Maybe that costs me readers, but I really do believe that chronically ill people face subtle but pervasive discrimination in American society – and that it won’t change until more people know about it. The ADA Restoration Act was a big step in the right direction, but we’re still some ways from a society in which sick people can participate fully and freely. It’s inspiring to see the previous generation taking on a very similar fight – and winning.