The Billy Tauzin Experience
Thursday, March 26 2009
A few posts back, I pointed out that Billy Tauzin presumes to speak for patients, despite not appreciating the typical experience of patients in our health care system. I wrote that knowing Mr. Tauzin had survived a bout of cancer against long odds. My point was not that Mr. Tauzin has no experience with illness, just that his experience is not at all typical.
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.
Duncan,
A couple of thoughts. FEHBP is subsidized by taxpayers. You and I both helped to pay Mr. Tauzin’s medical bills, while he does not contribute to our own insurance pools.
Next, what about the very large number of patients who cannot “beat the odds”? I can never be cured, but yet I live with the progressive and debilitating effects of multiple sclerosis and rheumatoid arthritis.
By far, the most stressful aspect of living with these diseases comes from the financial implications. I haven’t been blogging health care reform for several months now because it can be depressing and feel ultimately futile. It’s easier to give support on a personal level to other patients instead.
I appreciate your tell-it-like-it-really-is candor. Please continue to do so. And I hope to see that other post up here on your website.
Billy Tauzin epitomizes the worst example of politicians who sell their votes for monetary gain.
While in Congress Tauzin represented the drug lobby and pushed through the Bush senior drug plan.
Seniors, hammered by high drug prices were crying bloody murder.
So Tauzin worked out a deal. The drug companies wouldn’t give an inch. Instead, Bush would send the seniors bills to the American taxpayer.
It was a win for seniors…it was a win for the drug companies…it was a big loss for American taxpayers.
Not surprisingly Tauzin left his job in congress to go to work for…you guessed it…the drug company.
His million dollars plus salary is payback for all the goodies he delivered to the drug lobby for all those years in congress.
Nowadays lobbyist don’t wrap money in paper sacks and shove it under the Congressman’s door. They wait till he leaves office and then hands him the sack in the guise of a “salary”.
The American system of government is so corrupt, America ranks #17 on the corruption index…