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?

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.

In that earlier post, I quoted Harold Varmus from his interview on the Daily Show: “you don’t want the disease advocates warring with each other”.  Dr. Varmus was speaking as former director of the National Institutes of Health, where balancing competing research interests was a major – and difficult – part of the job. He apparently did a good job of balancing, but I think the problem is bigger than the NIH. There are a lot of disease advocacy organizations in this country, and they not only compete with one another for funding, but with other people and priorities. Most of these organizations channel their resources towards a very specific goal, research for a cure – which is a worthwhile goal, but not the only or most obviously-worthwhile goal. The kind of tension Dr. Varmus mentions – between basic science and disease-specific science – exists across a number of other dimensions, too.

Most of these organizations operate on a model that, as far as I can tell, was pioneered by breast cancer activists. There was a time when breast cancer was an underfunded, unknown area of medicine; also, dinosaurs roamed the earth. Today, everyone knows breast cancer exists, the federal government funnels billions of dollars into breast cancer research, and the pharmaceutical industry throws tens of billions more at the problem. By any account, this model worked very well for breast cancer as a “cause”, so no surprise that it’s widely imitated.

My own experience with this model is largely through the CCFA, of which I am no longer a member; I gather that nearly all disease orgs. follow the same model.  The reason I am no longer a member of CCFA, and the problem I have with these organizations in general, is that they reduce the entire experience of their  particular disease to a single problem – lack of cure. This attitude ignores a lot of any given person’s struggle with illness; even for a disease as specific as breast cancer, that experience is going to vary from patient to patient. I know two women dying of breast cancer. One – comfortably retired – puts a lot of stock in the various “for-cure” organizations. The other – a single mother struggling to pay her bills and put her kid through college – doesn’t; for her, they’re no help at all.

In my case, as I have learned more about Crohn’s, I’ve learned that lack of a cure is not my only or biggest problem – and meanwhile CCFA ignores the things that are problems for me. In general, the focus on “cure” ignores the real concerns of many of the very people these organizations claim to represent. The result is that some people benefit from these groups, and many people don’t. What’s worse – at least to me – is that there is no introspection, no reflection in these groups; they never ask themselves whether their priorities reflect the most morally or politically salient problems of illness in this country. The result is a vast and nebulous cloud of disease organizations where the patients – and the diseases – are subordinate to the organizations.

Take the focus on cures: who benefits from this? Nearly every organizations’ stated goal is to find a cure for the disease. But science isn’t a stripper: throwing money at it doesn’t make things move any faster. A cure will take time – possibly a lot of time. Especially if the disease is terminal, it’s likely that a significant number of sick people will die before a cure reaches them. So the focus on cure benefits only those patients who 1a) have the disease, but 1b) will not die from it before the cure is available, or 2) those patients who will develop the disease when the cure is available. In the meantime, a lot of people will suffer and die; what are the  organizations doing for them?

Yet even if the cure for every disease were found tomorrow, there would still be problems. Consider some of the new biologics being approved for diseases like RA, MS, and Crohn’s/UC: a years’ worth of remission-maintenance dosing can run into the tens of thousands of dollars. Medicines are getting a lot more expensive, and lots of people who can’t afford them are suffering for lack of money. Part of the problem is the research-driven agenda of the advocacy organizations: they subsidize expensive research for novel drugs. But expensive research produces expensive drugs, and meanwhile a range of preventive measures and non-drug interventions get ignored (not to mention Dr. Varmus’s concerns about basic science).

Let me stress how perverse this is: think of the several diseases that we know how to prevent but not cure, whether through vaccination, proper nutrition, hygiene, or whatever. Left to disease organization research, all of this knowledge would have been ignored in favor of “the cure”. Moreover, for-cure research is overwhelmingly focused on pharmaceuticals, to the detriment of every other aspect of health care. The kinds of changes in care coordination and management that might make a disease more livable get nothing; the assumption seems to be that it’s okay if you’re miserable, so long as someone somewhere is working on a cure (even if you might not live to see it). Yes, a cure would solve a lot of problems – but meanwhile there’s a lot that can be done to improve the lives of sick people.

These tensions are all the more acute given the current debate in government over the future of health care. By focusing on research, these organizations are missing a once-a-generation opportunity to transform the experience of illness in this country. Look at these lists, the supporters of major coalitions mobilizing on health care: Divided We Fail, Health Care for America Now!, or National Coalition for Health Care. Where are the disease advocacy organizations? Even worse, look at this list of participants and observers at the White House Forum on Health Reform – and ask the same question. This is a pivotal time for millions of people suffering from chronic and catastrophic illness, and yet precious few of the organizations that claim to be working on their behalf are at all engaged. This should be seen as – and is – an appalling failure on the part of these organizations.

As a general rule, I find it not worthwhile to reward failure and encourage ignorance. So I don’t give money to disease charities. I don’t walk or fun-run, I don’t wear a rubber bracelet, and I don’t give money to people who do, because these organizations’ priorities are nowhere near my own.  This isn’t to say that you shouldn’t support these organizations, but you should do so only if you’ve thought about it carefully. If you’re sick, think about whether these organizations are really doing what they say they are; if you’re not sick, think about your reasons for supporting these organizations, and whether there might be a better outlet for your interest.

And while you’re thinking, think about what you can do that’s truly helpful to the lives of sick people. To me, as a sick person, one of the worst aspects of these organizations is their aggressive insistence that the best way to help sick people is by funding for-cure research. That is a lie. Sick people face a lot of challenges, most of which cannot be deferred until a cure is found. If you’re sick, start talking about those challenges as you face them, and try asking for help.

If your concern is a specific person, get more involved in their life; ask them what you, specifically, can do to help them, specifically. For my friends who are sick, I make an effort to be there – to be available, to help them when they need it, maybe cook a meal or drive them to an appointment, but mostly to remain a presence in their lives. Look at the posters and the ads for these organizations: they’re clearly suggesting that sick people can only find community among their fellow-sufferers, as if our only hope to rejoin humanity is via the distant promise of a cure. That, of course, is false – and you can prove it false simply by refusing to be marginalized if you’re sick, or by being a friend to someone who is sick.

Now that the weather is improving, lots of these organizations are planning and recruiting participants and soliciting donations for their sorts of walks, runs, and cycling trips, et cetera. You might already be seeing ads, or getting emails, or walking past a sign-up sheet posted in the break room – and maybe you feel a little guilty about not throwing in your twenty bucks. This year: don’t. Tell yourself – and anyone who asks – that you’re committed to directly helping the sick people you know. And then go do it.

(photo from http://www.flickr.com/photos/bhermans/2445663522/)