For some reason, the equipment and medications associated with my condition make me suspicious by TSA rules. This time it was the scissors — short, blunt-tipped — that I have to carry for my appliance. I had no idea the scissors were even suspicious, so they were buried in my bag inside my appliance kit. The TSA agent of course had to take all of this apart to find them, which meant going through my medical stuff there on the exam table. Sometimes it’s the powdered medicine. I also am not at all comfortable in the milliwave scanners, so I end up just getting a pat-down. It’s always something, it’s always unpleasant, and it’s always a little bit humiliating. Once they took a jar of peanut butter from me, on the grounds it was a “gel”.

My one joy in life at these times is my pocket knife — one of those tiny keychain knives, which I take everywhere I go. I broke the blade off so I can take it on airplanes, since what I really need are the tweezers and scissors. But everytime TSA finds it, the agent pulls it out of my bags with a glint in his eye like he has stopped a Serious National Threat. And I have to disappoint him, that no, you won’t be getting Patriot Points for this one — the blade is broken off and it’s not an inch-long murder machine.

Thing is, I remember when this country wasn’t afraid of inch-long pocket knives. I remember when we weren’t paralyzed by scissors and powder. I remember when didn’t think a bottle of water was possibly a lethal explosive.

And we were a better country then, too. We were better people. Not cowards terrified of 3 and a half ounces of gel or liquid, and not bullies who hassle disabled people just because they’re different in ways that make us afraid. At the very least, we can’t claim to be “the Home of the Free, Land of the Brave” while the TSA is taking naked pictures of us, rifling through our luggage, and stealing our hand sanitizer. Brave people by any definition aren’t afraid of 12 ounces of peanut butter.

I am still not afraid of liquids or tiny knives of peanut butter. I am not even afraid of being blown up or crashing in an airplane, because that would actually be a much better way to die than my disease promises to be. I would rather that than die from Crohn’s — which is infinitely more likely to happen. The federal government isn’t doing a hell of a lot to prevent the latter, and the TSA is meanwhile making my illness even more difficult to manage by pretending to protect me from imaginary threats.

Someday Al Qaeda or whoever is going to put explosives into a colostomy bag, and then I’m done. I’ll never be able to fly again. In the meantime, TSA has become a painful reminder of the liberties we surrendered — that we have given up willingly — in order to feel more secure. To make healthy people feel more secure, that is — because those of who are sick have real problems and don’t need the TSA inventing new ones.

When I took down my blog last year, I went back and read through most of the posts. The posts I regret — the posts I deleted first — were attacks on specific people or bloggers, very SIWOTI kinds of arguments that don’t really matter to anybody. And I decided I would never do that kind of blogging again.

So this is not that kind of post, but I just can’t let Dr. Salwitz skate past without a few remarks. I mean, really: “At the hospital, we will …  Make new syringes into trash…. Dull scalpels.  Plan vacations….  Give out beds to homeless.” I hope to Hippocrates I don’t need to go to the hospital the day after the day they cured cancer. “We’re sorry, Mr. Cross: you can’t get any needle drugs because we threw away all our syringes, you can’t have surgery until we sharpen all the scalpels we decided to make dull, you can’t see a doctor until they all get back from vacation, and we don’t have a bed for you because we gave all of our Hill-Rom electronic adjustable memory-foam hospital beds that cost $5,000 (used) out to homeless people who are now pushing them around town unplugged and defunct. But you see, this all a good thing: we just cured cancer. You’re f—-ed, but cancer is cured.” Cancer is of course the only disease that matters to anyone, anywhere, ever. The day cancer is cured, the rest of us sick people had better be out there throwing confetti or lighting fireworks or whatever.

And if you currently have or have ever had cancer, guess who Dr. Salwitz considers the ‘soldiers’ in that fight? Not you, my friend. Instead, “the lab tester, blood drawer, x-ray taker, pharmacy mixer, front desker, researcher, bill sender, educator, social worker, floor cleaner, food cooker, CT scanner, doctors and every disease task doer”. So congrats — in the war on cancer, those of you with the disease are just the battlefield, not part of the army. The ‘bill sender’ that sends you the bill you can’t pay because you lost your insurance when you got fired because you were too sick to work: he’s a soldier, but you’re… a survivor? victim? refugee?

Don’t get me wrong: it will be a good day when we cure cancer. I don’t think cancer is a good thing. But I’m also aware that it’s not at all the only bad thing out there. So maybe Dr. Salwitz could just nod in that direction, instead of writing as if a cure for cancer will bring the end of history. And I know this is selfish of me, but the thing I am most looking forward to from the cure for cancer is an airtight excuse not to give money to the cancer walk-a-thonners. That will be a great day, though I have the sneaking suspicion that the very next year I’ll get a ton of emails asking me to contribute money to a walk-a-thon commemorating the victory against cancer, or some such malarkey. That Komen lady will never give up — of that, I am certain.

There, now. I have done my sniping, and it’s time to get serious and meaningful and important. You don’t have to take any of the above too seriously, but the rest is stone-cold reality.

Dr. Salwitz writes that, “I will see life on the day we cure cancer.” I get what he means, but here’s the thing: there will be life to see every second of every day between now and the day we cure cancer. Cancer — disease in general — does not make our lives invisible. Dr. Salwitz does not need to wait for a cure to open his eyes to those lives — the amazing, insistent, exhilarating, exhausting lives being lived by the people all around him, especially his patients. It is there, it is there right now, and it cannot wait for a cure.

The cancer people — the ‘soldiers’, not the patients — have this idea that all we really need to make things right is a cure. A cure will make cancer disappear forever. And it’s a fantasy. It’s not going to happen, and if it does, there would still be millions of people suffering the effects of having had cancer. If my illness were cured tomorrow, I would still be messed up and fragile and difficult. I would still be haunted by death. But even if my illness is never cured, I will still be every bit as alive as I was before I got sick. And I want physicians who see that, who are willing to help me fight to live that life now. I can’t wait for a cure. I won’t suspend my life waiting for a cure that might never come.

Ultimately, I don’t care whether I am cured or not, whether I live or die, so long as the life I have right now is meaningful. I don’t think Dr. Salwitz gets that, and I worry this is a widespread attitude among the medical community. Patients — whether or not they have cancer — do not need a cure to start living. What they do need is physicians with open eyes and hearts and minds, who are ready to help them fight to live as best they can today.

I think Change.org is generally a worthwhile project, but the interview does not mention — and the company is coy about this, too — that Change.org is a for-profit corporation. So it is not exactly the case that Rattray abandoned a lucrative career in investment banking for the poverty of social justice, as the interview implies.

At one point in the interview, Rattray says Change.org was founded to “empower people to say what they want around the issues they care about”. My own experience was that some people are empowered more than others. The specific person I have in mind is Fran Drescher, who started her own YACC*, Cancer Schmancer. She apparently paid money to put a post on Change.org’s health policy blog about her organization, which included a solicitation for donations. Drescher’s organization isn’t exactly the vanguard of progressive change; it’s focused on early detection, prevention, etc. — basically the approaches to cancer that every cancer organization. Drescher herself has come out in favor of health care reform, but that side of her did not show in her Change.org posts, which focused instead on the limited scope of her organization.

After Drescher’s post was published on Change.org, I wrote a post suggesting that donating money to cancer organizations is not the best way to drive change in our health care system. The editor initially accepted the post, then spiked it. I then asked him, in a reply-to-all email that went to the rest of the writing staff, why he spiked my post. At that point my association with Change.org ended: I was, it turned out, not in fact empowered to say what I wanted around the issues I cared about, at least in an official capacity.

The point here is not that Change.org is some dark sinister organization that says one thing and does another. The point is that it is subject to the same commercial dynamics that most corporations face. That means among other things that they have to talk up online petitions as a tool for change. Why? Because their revenue stream depends on their ability to sell names to organizations. And the fact is that no online petition is going to matter until it has consequences in the offline world. That’s also true of blogs, I am well aware.

Change.org has been reorganized since I left, with less emphasis on the blog side of things. My posts there are a little hard to find, but you can read them all here.

*Yet Another Cancer Club

This time we turned that corner and saw an enormous Republic of Vietnam (ie South Vietnam) flag, with the legend “30-4-1975″ written across the center. “What does that mean?” asked my Menu Consultant. “Must be commemorating the fall of Saigon,” I said. And note that this banner was flying on the 14th of April — more than two weeks before the day itself.

The banner reminded me that a lot of my favorite cuisines derive from American military adventures — usually the fights we don’t quite win. In addition to bánh mì, we are also big fans of phở — the Vietnamese noodle soup — and Vietnamese food in general. Don’t get me wrong: I think the war in Vietnam was a horrible tragedy, and my heart goes out to the Americans and Vietnamese who died or lost family, and also to the many Vietnamese who had to flee their homeland. That said, you really have to try bánh mì and phở. Chicken phở is our go-to meal for sick days — tummy upsets, colds, flu, you name it.

We like Thai a lot, too, which also came to this country via the war in Vietnam. Cuban food is a personal favorite of mine, and probably would not be if the Bay of Pigs guys had had air support. A couple months ago I had Korean barbecue for the first time, which I guess is just a big pile of meat cooking on a wok on the table in front of you. I shudder to think what that amount of food would mean to a North Korean family, or even just what the waitress ended up throwing away.

Point being, I hope Iraqi food tastes awesome, because in twenty years it should be be everywhere. Maybe something like Lebanese food? We have a couple Lebanese places nearby, and for that we can probably thank the Marines departure from Beirut in 1983. I watched that episode of Anthony Bourdain where he went to Kurdistan (in north Iraq) and it looked like the food was pretty good — also, it was the only episode I can recall of that show where Bourdain stayed sober throughout. In any case, I am sure the Kurdish will be the new Lebanese at some point.

We already have Afghani restaurants near us, one of which I visited in the early ’90s when I came to DC with my family. I remember it had a carpet on the wall with an AK-47, a Russian armored personnel carrier, and a helicopter gunship woven into the design. I’ve read you can tell which part of Afghanistan the carpets are from by which specific military equipment are in the patterns; different places saw different weapons. The restaurant has since redecorated and I think the carpet is gone, but the food is still excellent — thank you, Charlie Wilson, for helping bring us the Afghanis’ delicious dumplings and lamb dishes. If you don’t know what I mean, wait twenty years — there’ll be one between Panda Express and Sbarro’s at your local food court.

Aside from all the great food, those of us with disease and disability can probably look forward to another consequence of these wars: an even bigger role for disabled people in American society. As far as I can tell, we got the Americans with Disabilities Act largely due to the experience of disabled Vietnam vets coming home from the war. No war, no wounded, no laws protecting the disabled. Watch The Music Within (3.5 stars, and Ron Livingston is excellent) to see what I’m talking about.

I want to be very clear: I’d not wish a war wound on anyone. I protested against the Iraq War before it started, and joined peace vigils while it was happening. Had I been able, I would have served (though probably in the Air Force, that being a family tradition for two generations, so at no great peril). But I’m not able, I’m sick and stuck trying to make way in a society that has made great strides in its regard for the disabled but is not quite all the way there yet.

So while I hate the fact that our guys and girls are coming home dead and injured, I also know that our injured troops are going to be a force for change in simply because of their numbers. I spent a little time during the blog hiatus volunteering with disabled vets — and I don’t want to make this seem like a big deal, because it was only a few times — enough to recognize in some of the young men I met the bewilderment and uncertainty I faced when coming to terms with my illness at their age. Believe you me that when those veterans get their bearings, get organized, and make themselves known, change is going to happen. I think that change will necessarily have a spillover effect for folks with similar problems, much as the ADA did. Life is going to get better for a lot disabled people, whether or not they served. And if that seems unfair, I didn’t volunteer to get sick.

Twenty years from now when I’m eating my lamb burger at the local Operation Dessert Storm franchise, I hope I will remember to thank the troops — not for what they did over there, so much, but for coming back broken and shattered and still fighting to live meaningful lives. That fight, the fight for a real place in our society, is just beginning for those thousands of young men and women, and theirs is a war I can support 100%. I say, “bring it on.”

In January I had surgery to reconnect the remains of my bowel. I had been waiting for this operation for a long time. Some people adapt well to the appliance, but it has been a constant frustration for me. I need to be rid of it. My surgeon thought I had a good chance of a successful operation. He was wrong.

When they opened me up and got down into my abdomen, the surgeon realized that there was too much scar tissue to finish the operation. What’s more, the scar tissue had fused with my bladder, so there was  a significant risk that my bladder would be damaged in the operation. He pulled out, sewed me up, and I spent the next six days in the hospital.

When I woke up after the operation, I knew immediately that it failed. I think it was because there was no nasogastric tube, or maybe I was somehow aware despite the narcotics that I was still wearing the appliance. Either way, it was crushing. I was extremely angry — not that I could fault the surgeon’s judgment, which was sound. But it was a lot of pain to find out things were going to be exactly the same. Almost three months later, my incision still fucking hurts. I am still angry.

Not only do I still have the appliance, but I left the hospital with a fungal infection beneath the thing. Pre-surgery, I was changing my appliance twice a week. The infection eventually made the skin underneath unbearably itchy, and I have spent the last two months fighting it with powders and creams, and changing my appliance almost daily, sometimes twice in one day. Only in the last week or so have I had any success, but I am still constantly aware of the appliance, and always sensitive to any tickle or twinge that might signal the organism’s resurgence. I sleep soundly maybe one night in seven. I am tired and frayed and I hurt.

Meanwhile, my career has run into significant trouble, which more or less relates back to my illness. The expectations my supervisors have are untenable given my health, and they have not provided the support or flexibility I need. I am trying to decide whether it’s worth fighting — and that would mean wielding the ADA like a sledgehammer — or whether I just move on. In any case, it is something else the illness threatens to take from me.

I stopped blogging because I wanted to focus my energy on the person I was apart from my disease. Diana’s question is tricky in my case, because of course Duncan Cross is an alter ego for a person who tries to have a normal life offline. The things I talk about here I am not comfortable sharing with most folks in the real world. They would not understand, in a way that I hope other sick people do.

I thought that being Duncan Cross was a distraction from the real me. So I put the blog away to go out and be someone not completely overcome by my disease. It looks like I have failed. Which means I don’t really have an answer for Diana’s question. I know the person I want to be, what I would do if I weren’t sick, but I seem to have no power to be that person, to become that person. My mother is trying to help me find a new career — she knows some people — and so she asked me, ‘what are you good at?’ The only thing I am really good at anymore is fighting my illness.

My career is, or was, in education, so I have at least been able to take a semester off to deal with my surgery. This time off, the discipline and rhythm of recuperation, has felt more like the real me than anything I have done in the last two years. If I were not sick and injured, I suppose it would feel like indolence, since I am not really doing anything — and yet it feels now like my vocation, like honest work.

The point, I guess, is that I feel a lot like Duncan Cross these days, and a lot less like whoever I am without my disease. I can no longer tell where disease ends and person begins — it has come to infect everything about me, every interaction and aspect of my life. I hate that, I don’t want that, and I have fought it, yet it is.

I think the only thing I can do about it, at least for now, is return to this blog. I think I was better at bracketing out the illness from the rest of my life when I was blogging regularly. I think having the vessel of Duncan Cross in which to dump my ills was a psychologically useful device. I think that in order to be an offline person not completely overwhelmed by my disease, I have to be an online person who is. That seems dishonest somehow, but I have come to suspect that the ‘real’ me is the liar, and Duncan Cross is the truth. That is who I am: there is hardly anything of me without my disease.

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.