Larry Husten writes CardioBrief for Forbes.com. Commenting on the recent FDA Avastin hearings, he declared that he is “sick and tired of the excessive role given to patients in news stories about health and medical issues… Nearly every story included respectful, uncritical and often fawning coverage of the patients who spoke at the hearing … They all said the same things: Avastin saved my life. I wouldn’t be here without Avastin. I demand the right to choose Avastin.”
Husten said good journalists would ask hard questions such as: What is the evidence for your claim? How do you know the drug saved your life?
He praised a MedPage journalist for ” bravely tell[ing] the harrowing tale about how during the FDA hearing the fanatical self-appointed patient advocates bullied and harassed FDA officials and anyone else with a different viewpoint.”
Husten concludes: “When reporters cater to these type of people they not only foster fuzzy thinking, they encourage a mob mentality that tears down any semblance of rationality or any possibility of intelligent discourse. Medicine, of course, is all about the patient. But that doesn’t mean that every patient is right, or deserves a public voice, or that uncritical journalists should assist them in metastasizing their views.”
Dear Mr. Husten,
On behalf of the estimated 155,000 U.S. women currently living with metastatic breast cancer, I would like to apologize. How dare these women disturb the cathedral-like confines of an FDA hearing? The nerve of these hussies! With so many of them being young mothers, I am appalled that this is the example they are setting for their children.
I am so sorry.
Ladies: Please remember, when you go to an FDA hearing, you should treat it like like the “March of the Siamese Children” in “The King and I.” Your are not to turn your back on Richard Pazdur, head of FDA’s cancer drug division . Since he is The Man, however, it is his right to turn his back on you, as he did for virtually the entire hearing.
Some of you have never been to an FDA hearing. Let me remind you that reverent silence should prevail. It’s no different than being in a library, church or a cemetery. And, since we all know that in 2011 that metastatic breast cancer is incurable, of course we all want to ensure our families won’t disgrace us at our funeral services or grave side ceremonies with unseemly emotional outbursts. Practice makes perfect! Yes, my sisters, this FDA hearing presents a teachable moment. Carpe diem!
You are so right about that mob mentality, Larry. You know, a lot of these cancer ladies drive mini vans. And those vans are a rolling armory of potential weapons: Wet Wipes, Harry Potter books and smelly soccer shin guards are all within arm’s reach. There’s no telling what these “fanatics” as you so aptly put it, might do. (Provided they are having a good day.)
I am so ashamed about bullying Pazdur experienced. The poor man, it seems to happen to him a lot. Remember in the fall of 2007? “Dozens of protestors gathered outside the FDA’s headquarters to complain about the agency’s handling of cancer medicines,” according to Ed Silverman. “Two prostate-cancer patients blamed the agency for rejecting the Dendreon vacccine known as Provenge, which they said helped keep them alive. Later, the group broke into a chant: ‘Pazdur Must Go! Pazdur Must Go!'”
The meanies. And then the cancer girls had to go pick on him, too. I hope Mrs. Pazdur fixed Dickie a nice hot mug of Ovaltine after his harrowing day.
You are so right to suggest muzzling patients like those who testified at the Avastin hearing. We, the people with metastatic breast cancer should stay strong, be positive and defer to medical and government officials who know what is best for us and can be relied upon to act in our best interests. Remember Rose Kushner?
Per Wikipedia, in 1974, Kushner objected to the then standard-treatment, in which a tumor biopsy and radical mastectomy were performed in a single surgical operation while the patient was under anesthesia. She resisted the then-standard radical mastectomy procedure in favor of a less invasive procedure.
She traveled to Europe to learn about breast cancer treatment there, finding that the radical mastectomy was not used as widely as in the United States. In 1975 she wrote a book: Breast Cancer: A Personal History and Investigative Report. It was widely criticized by other doctors and the American Cancer Society.
Kusher attended numerous meetings of medical professionals, interrupting presentations, questioning conclusions, and speaking against the prevalent practices of one-step breast cancer surgery and radical mastectomy. In 1975 she was “booed off the stage” at a meeting of the Society of Surgical Oncology, whose members objected to her challenges to traditional treatments.
In spite of her unpopularity with the mainstream medical profession, Kushner’s work was well-received in the public and won increasing respect in official circles. In June 1977, she was the only lay member appointed to a ten-member National Institutes of Health (NIH) panel that evaluated treatment options for primary breast cancer. In 1979, the panel issued its findings, concluding that the Halsted radical mastectomy should no longer be the standard treatment for suspected cases of breast cancer, instead recommending total simple mastectomy as the primary surgical treatment. Additionally, Kushner convinced her fellow panel members to include a statement calling for an end to the one-step surgical procedure. At the time of her death, Dr. Bruce A. Chabner of the National Cancer Institute said she was “probably the single most important person” in ending the practice of one-step surgery for breast cancer, because of her persistence and because she brought medical information to a wide public audience that otherwise might have remained unaware of the options.
I was learning my multiplication tables during the peak of these advocacy efforts. But clearly, this Kushner woman was some kind of lunatic. The “fanatical” patients at the FDA hearing must be just as nefarious as anyone who would dare to suggest mastectomies didn’t have to be painful, disfiguring and potentially disabling.
Larry, I am going to go out on a limb (so to speak) and assume your boobs remain intact. Well, I am missing “Lefty,” and man, I am so pissed off that thanks to busybodies like Rose Kushner that I couldn’t have a good old-fashioned hack job. I mean if it was good enough for Betty Ford, it’s good enough for me, dammit!
You are also so very right about the fawning treatment accorded metastatic breast cancer patients and related developments. In 1999, for example, Business Week gushed about Herceptin:
“The results mark the first time in 40 years that any treatment has improved the survival rate of women with breast cancer that has metastasized...the risk of death for women who took Herceptin in the late stages of breast cancer was 22.5% lower than for women who were treated with standard chemotherapy.
“In real terms, this difference may not seem like much — women on Herceptin had a median survival rate of 24.8 months after treatment, vs. 20.8 months on standard treatment. However, metastatic breast cancer is almost always fatal, so any improvement in survival rates is a cause for rejoicing.
Some of these nutty cancer broads actually got their doctors to testify, too. What’s up with that? According to TIME:
Beth DuPree, a Pennsylvania breast cancer doctor who as a surgeon does not prescribe Avastin but does have patients who are on it, mocked the supposed scariness of the 1% chance of death from the drug — for use by women with a 100% chance of dying of Stage 4 breast cancer. “It sounds bad to say,” she told [the TIME reporter] outside the hearing, “but if you take the drug and it doesn’t work for you, you die right away,” not because of the drug, but because of the cancer.
DuPree said she has had patients get a couple of extra years of life as a result of Avastin since it was provisionally approved — pending further clinical-trial data — for patients with late-stage breast cancer in 2008. Since then, Roche has failed to prove that it sufficiently extends or improves the quality of life for women with terminal breast cancer. Yet, for some reason, it does seem to help a minority of patients.”I had one woman who got to watch her child go from 12 to 14″ because of Avastin, DuPree said. Is that a big deal? If you’re that woman or her child, of course, that’s not even a serious question… And if you happen to be one of the roughly 17,500 patients in the United States for whom the drug is working, you don’t really want to hear that your experience is statistically insignificant..Can 17,500 women really be anecdotal?
Again Larry, I am so sorry you were subjected to these patients’ presence and their trivial concerns.
We, the people with metastatic breast cancer, account for 90 percent of the deaths from breast cancer, yet metastatic breast cancer receives less than 3 percent of all research funding. Every year, 45,000 of us people with metastatic breast cancer die. Obviously our silence is imperative to preserving this awesome track record.
P.S. I see that you drove a taxicab in New York City before embarking on a career in medical journalism. I can only surmise once a hack, always a hack!