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

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.

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.