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.

Hello Class of [insert year]. Congratulations on this very special day. If you think your parents are excited for you, wait till you hear from your lenders. I don’t envy you that.

Nor do I envy you the effort you have had to expend to get here. You must be tired. I will be brief.

Your education and training puts you in the elite of knowledge-based professions. In this increasingly knowledge-driven economy, you are drawing ever closer to the peak. Your skills are invaluable to society; your expertise essential to civilized life. Without you or people like you, our society would literally fall apart. You can expect – and you will command – tremendous respect for your achievements  and accomplishments thus far.

There are, however, different kinds of knowledge. You have been trained in the clinical, and nobody in their right mind will question your qualifications of clinical issues. Which isn’t to say you won’t be questioned; there’s always Jenny McCarthy, whose most valuable contribution to civilization was sucking the chrome off a trailer hitch in “BASEketball“.

But the people who come to see  you: they will come because your knowledge can help them. Many of them will depend on you – their lives will depend on you – to use your knowledge to solve a problem they face. Diseases. Injuries. Disabilities. And I trust you will excel in this task.

The vast majority of problems you will see have a simple, straightforward remedy. Antibiotics for strep. A cast for a broken bone. Stitches for a deep cut. A band-aid and reassurance for a worried parent.

And the people you see – the people you help – will be tremendously grateful to you. You will have their thanks, and their respect, and no small amount of their money. (Someone will get the money, anyway – even if your share seems too small.) And they will leave the clinic and go back to their homes, to their lives, to their worlds.

For a few of your patients, your knowledge won’t be enough. You won’t know how to cure Huntington’s disease. You won’t know how to cure MS, or RA, or IBD, or any of dozens of illnesses still baffling medical science. For people with these diseases, your knowledge won’t be enough. You won’t have the knowledge necessary to send them back to their lives. Nobody does. That’s something you – and they – will have to learn to live with, for the time being. Their problems will be ongoing, and will cost these people tremendously – in money, in time, in tears, sweat, blood.

Many of them will die from their illnesses. And I am sorry you will have to be party to that. Don’t torture yourself if you didn’t know enough to save them. Just don’t stop learning.

In the meantime, the fact that their illnesses persist means they will face a myriad of additional problems. These problems are not clinical. They are beyond your training and expertise.

To take an example from my own life: shortly after I graduated from college, I was in the middle of a mild flare of my disease. I was functional, I could work, but I looked sick. And as I interviewed for jobs – I was well-qualified – it was obvious that I was sick. And nobody would hire me. Which meant I could not get health insurance. These problems affected my clinical situation – I volunteered for clinical trials, as a way to get health care – but they were not simply clinical problems.

Your patients will face stigma. They will struggle through routine, daily tasks. They will have difficulty working. They will have difficulty paying you to help them. They will face emotional stress and pain well beyond what their physical condition might suggest. Spouses and loved ones will reject and abandon them.

Many of them will face these struggles utterly alone. And they will bring their lives into your clinic. You will be sorely tempted to ignore these problems, or to minimize them, but you should not.

You are right to think that these are not “your problems”, because they are not clinical problems. They are not the problems you have been trained to address. We might call them instead “social problems” – to capture in a broad stroke what is economic, emotional, relational, and political about being ill. Disease may be a clinical problem at root, but illness in full bloom is very much a social problem.

Just as there is clinical knowledge – and you are its vanguard – so there is social knowledge. Many of you – thank God – have an aptitude for social knowledge, but you are not experts. In fact, precious few people are. Most of your patients – the ones who need your help the most – will not have access to anyone will the sort of social-knowledge expertise that might help them.

So they will face a host of problems for which there is no “doctor”. And some of these social problems will be more pernicious than disease itself. Some of these problems will be every bit as disabling as their diagnosis.

As experts in clinical knowledge, you are taught to narrow problems down to a single point. It’s not enough to treat every skin problem the same, nor every skin cancer the same. You instead narrow the problem down to a single point – basal cell carcinoma, perhaps – and that is the problem you solve. Yes, I am oversimplifying – but a great many of the problems you have been trained to solve are like this.

Social problems are not like this. They do not exist at a single point. They are often vast and nebulous, in defiance of any attempt to narrow or simplify them. They are often “wicked”, in the technical sense – you think you’re solving one problem, and create three others.

I am not saying you should shy away from these problems. I am warning you: they are much tougher than anything you are trained for. I want you to be engaged and interested in how your patients live outside the clinic, but if you think you have found a simple, single solution to their problems, you are wrong. You are applying clinical knowledge to social problems, and at best you will not help your patients. At worst, you will harm them, perhaps grievously.

(And by the way, you will never be sued or punished for this sort of mistake , as you might be for clinical mistakes. There are doctors who destroy their patients with clinical solutions to social problems, without ever realizing what they are doing. I have survived two of them myself.)

To offer a possibly controversial example on a large scale: we are in the midst of a debate over health care reform, with physicians tending towards either pole. On on side, there are physicians who vehemently insist that the market is the solution to our health care problems, as if “the market” were a pill dispensed by your local economist that we could all take. On the other side, there are physicians who vociferously push for a single-payer overhaul – as if we could simply anaesthetize our health-care system, wheel it into the OR, and emerge a few hours later with single-payer. This is clinical thinking, applied to social problems.

Neither one has much chance of working, at least not in the ways their physician supporters expect. It takes social knowledge to appreciate that fact.

But even if you don’t know much about social problems, you can always learn. There are ways to train people to be experts in social knowledge. You have likely received minimal, if any, training in the social problems surrounding disease, and for that I am sorry. I wish it were otherwise, but perhaps the clinical was already demanding enough.

In all likelihood, you will learn most of your social knowledge on your own. One of your best resources – apart from here and now – is, of course, your patients. Listen to them. Talk to them. Ask them about their lives. Ask them how you can help. As you learn, do not be too quick to arrive at your conclusions.

Whatever else you do, please do not assume that your expertise lends itself to social knowledge. When you step through the clinic doors into the realm of the social, you have just as much to learn as the rest of us. You are just as unqualified as anyone else.

Rest assured: you can spend your entire career in ignorance of the social problems your patients face, and still be a very fine doctor by the standards of your field. You may choose to ignore those problems and focus exclusively on clinical problems – and many of you probably will. But if you are among them, for Pete’s sake, don’t pretend you are doing anything more.

A few of you will attempt to balance social and clinical knowledge, and your reputation as a clinician will likely suffer. But the payoff is this: if you succeed, if you come to appreciate the social problems patients face even half as much as you understand their clinical problems, you will have the ability to help millions of people. It goes without saying that you will not see most of these people in your clinic, but your knowledge will have tremendous potential to transform their lives for the better – in fact, to transform society for the better.

In either case, you first must learn to recognize the difference between the clinical and social. If you cannot do that, you might well be a help to your patients, but you will never – never – be the help they need.

Again, congratulations – and good luck.

*Attention medical schools: it is in fact possible for you to live out this fantasy, and my definition of “fabulously well-paid” is really quite modest. Email me.

Watching House, MD though, things have been taken to an even higher level of unrealism… So why does this matter? It matters because there are a lot of people out there who have a big problem between fiction and reality.

The author, Dr. Heal, is an ER Doc. I appreciate his frustration, which I’ve heard from other doctors, too. It’s the same frustration attorneys have for most legal dramas, or that cops have at cop shows – for that matter, somewhere right now a meerkat blogger is complaining about the half-truths and exaggerations of Meerkat Manor. So, yes, House, MD is unrealistic. But let me explain why this doesn’t matter: if you’re a patient, it’s the best show on television.

To appreciate that, you need to understand two things that are not obvious: first, it’s not a medical show. It’s a mystery show. The series is quite deliberately modeled on Sherlock Holmes; House = Holmes, Wilson = Watson. Get it? And it’s a very good mystery show – taut plotting, crisp dialogue, and sharply-drawn characters, with some of the best acting out there. It just happens to be a mystery show set in a hospital, the way Scrubs is a sitcom set in a hospital. Neither House nor Scrubs are “medical shows”, in the sense of belonging to that particular genre.

Second: to the extent that House borrows from the medical genre, it does so as wicked satire. Even when the genre was fresh – aeons ago – medical shows never showed doctors and patients with any modicum of realism. That’s not to say fiction owes any fealty to reality: a work of art is no less true for being entirely unreal. But to complain that House, MD is an “even higher level of unrealism” misses the point: that “higher level” is it genius, its edge, its truth. That higher level shows the plain stupidity of lower level shows – current, prior, and forever.

Take, for example, the representation of doctors in medical dramas. After decades of watching TV doctors’ failings unfold in prime time, audiences are fully prepared to lionize any person claiming an MD – even an arrogant junkie misanthrope like Gregory House. No real patients wants Dr. House to be their doctor – except for the fact that he solves every case, which is true of almost any TV doctor and exactly zero real doctors. This is a trope deeply ingrained in the medical show genre; it’s not original to House, nor has the medical profession done much to disabuse audiences of the notion. You can still find plenty of doctors who wear their degrees like a combination crown/halo; every patient knows at least one. (For the record, Dr. Heal does not seem to be one of these.) I’m sure those doctors loved the image of physician as all-knowing, all-healing superman – and certainly all physicians benefit from it. Of course they don’t appreciate seeing the myth perforated; but for patients, this is an absolutely necessary step. We need to learn that our doctors inevitably possess some degree of human weakness, even if we don’t see a cane.

The best, most realistic part of House – for me, as a patient – is its sense of humor. About 99 times out of 100, when someone not sick tells you humor will help you get through your illness, what they mean is that you shouldn’t think too hard about your bold new world of suck. You are instead supposed to divert yourself with trifles: thus was born the “Hang In There” kitty. What they don’t mean – what scares and confuses them -  is that you should actually laugh at illness, pain, and death itself. That makes kitty cry. Yet I have found that my best, my only defense against the horror is to laugh at it. If I allowed myself to take my illness too seriously, it would overwhelm me; fear would be my only reality, death my only hope. If I want to take my life seriously, I have to be able to laugh at death.

Medical shows can’t laugh at illness and death, because that would deprive them of the tension necessary to hold their audience for 47 minutes at a time. They have to take it all so seriously, so earnestly – and so medical shows are humorless and tedious when it comes to illness and death. But nor can they be realistic in their seriousness: if these shows were honest about the reality of medicine, without any humor, they would be so deeply depressing and disturbing as to be unbearable. They exist instead in an over-exposed snapshot of reality – where doctors win more than lose, patients are always inspiring, and every disease is an emergency. As such, these shows don’t reflect my experience, don’t appeal to my sensibility, and don’t offer anything I recognize as truth about the human condition.

But House, MD starts from a different premise – already so unrealistic, so hyperbolic and excessive, that it has no obligation to take itself seriously as a medical show. The dilemma in House is not life or death – it’s knowledge. This, to me, is a far more compelling problem than death. The truth is, we’re all going to die: we just don’t know how or when, yet. In the meantime, House, MD offers a way past the horror: because the show doesn’t have to take life and death so seriously, it gets to have a lot more fun. It gets to be funny – and therefore true – in ways a million Grey’s Anatomy script-writers typing on a million typewriters could never be. Hugh Laurie is no less than a messenger from heaven, telling us it’s okay to laugh.

Ultimately, House, MD is not a show about medicine; if you want that, there are lots of mostly accurate, perfectly dull medical reality shows on Discovery. I don’t think anyone – not any patient – should watch House, MD thinking, “this is how medicine should work.” That’s not the point of the show, nor the point of fiction more generally. Yes, there are some dumb people who don’t get it – but art, even television, isn’t obliged to the dumbest people in the audience. For the rest of us, House is one the best things on the air right now; not an entry to the reality of medicine, but an escape.

(ER Drama link via Kevin, MD)

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.

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/)