In a comment left on my blog, Jamie Bearse, the chief operating officer of Project Zero – The Project to End Prostate Cancer, showed how quickly and deeply discussions about screening tests can devolve into ugly rhetoric. Bearse wrote:
“Your comments along with Otis Brawley’s vendetta against the PSA sentence men to die from prostate cancer testing. Shame on you. It’s important to know your score to make a proper diagnosis and decision of if and how to treat prostate cancer. Groups that create screening guidelines for cancer such as American Urological Association and National Comprehensive Cancer Network say get tested. In fact, Brawley is at odds with his own organization. ACS supports testing as well. Otis Brawley has killed more men by giving them an excuse to not be tested. Don’t follow that path just because of your own bad experience.”
My comments policy states that I will delete comments that make personal attacks. You certainly did that with your statement that the chief medical officer of the American Cancer Society “has killed” and that he has “sentenced men to die.”
Nonetheless I have posted your comment because I think it’s important for other readers to see how some pro-screening rhetoric so quickly and completely devolves into ugliness.
YOU ARE WRONG when you say that Dr. Brawley “is at odds with his own organization.” In fact: “The American Cancer Society recommends that men make an informed decision with their doctor about whether to be tested for prostate cancer. Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment. The American Cancer Society believes that men should not be tested without learning about what we know and don’t know about the risks and possible benefits of testing and treatment.”
And that was the point of the blog post – a call for shared decision-making – something to which you say, “Shame on you.”
You are also apparently deliberately incomplete in your statement that “Groups that create screening guidelines…say get tested.” The US Preventive Services Task Force does not say that. The American College of Physicians does not say that. The American College of Preventive Medicine does not say that. The American Academy of Family Physicians does not say that.
So you are wrong on your facts, incomplete and imbalanced about your guidelines statement, and apparently have gone on record opposing shared decision-making. The trifecta.”
The rhetoric, the ugliness, the distortion of evidence that has taken place in politics seems to have bled over into health care discussions. Perhaps this is not surprising, given how politicized health care reform has become.
Recall how the concept of advanced directives for end-of-life care decisions – another shared decision-making issue – became a “death panels” rallying cry.
Recall how the evidence-based recommendations of the US Preventive Services Task Force on mammography became a “Throwing women under the bus” in some circles.
Earlier this summer, Emily Walker of MedPage Today covered the FDA advisory committee meeting at which the committee recommended removing the breast cancer indication for the drug Avastin . She wrote this first-hand account of some of the ugliness that took place:
“Christine Brunswick, the vice president of the National Breast Cancer Coalition and breast cancer survivor, took the mike and urged the panel to vote to withdraw the breast cancer indication, saying the data don’t show that it extends the lives of breast cancer patients, but do show it increases risk of harm, especially risk of hemorrhages.
“This decision can’t be driven by anecdotes,” she said. “It must be driven by science.”
Next, a woman got up to give her public presentation and started by saying, “I am disgusted to have to speak after that woman.” Her statement was met with applause.
But perhaps the most biting comment said by one of the patients at the hearing came the next day after every member on the panel — including the patient representative — voted against Avastin keeping its breast cancer indication. By day two, only a handful of patients remained, and they all stood as the vote was read, arms linked.
After the vote was read, they cried silently for a bit, but then began telling the panel about how the drug had worked for them.
One women yelled, “What a patient representative! You better hope your breast cancer doesn’t come back. You’re an embarrassment to all cancer survivors. ”
That was met by a sharp intake of breath, or maybe that was just me.
FDA hearings — and all government hearings for that matter — should be a chance for all sides to have their views heard. No well-intentioned person should be subjected to a public flogging, and in this case, have their status as a cancer survivor attacked.”
In response to that story, respected patient advocate Musa Mayer left an online comment:
“As a patient rep for (the FDA’s Oncologic Drugs Advisory Committee), I too have been publicly reviled for making evidence-based decisions that I felt would benefit the larger population of patients. It seems we’re expected to think only of immediate needs, and not public health consequences, or even of those not present who did not benefit or were harmed by the drug in question. It’s all about access, not science. Those of us like Chris, and the three others who bravely spoke out to support an evidence-based decisionmaking process at the Avastin hearing, have had to grow accustomed to receiving hate mail, hurled epithets intended to shame us, and even threats from those who claim to speak on behalf of patients. Alas, this is nothing new.”
Of course, the tone may have been set after Republican Congressman Joe Wilson yelled out “You lie!” at President Obama during his health care speech to Congress.
Many screening advocates create a false dichotomy – as if those who call for informed shared decision-making prior to screening are actually urging people NOT to be screened. So they frame their advocacy as “We want to save lives and you don’t.” That’s what the Project Zero exec did with his comment above. I, for one, would never urge a man NOT to be screened. I am not anti-screening. In fact – perhaps shocking revelation here – I have had the PSA test myself. But the screen-everybody advocates tout only the benefits of screening. Whereas the shared decision-making advocates believe that people should have a complete and thoughtful discussion of the facts about the limitations of screening, about the tradeoffs between benefits and harms, and about what you would do if you do have a positive or elevated test result.
If you don’t think about those things BEFORE you have the screening test, you may regret it after. These are issues of personal choice. So that choice shouldn’t be a spur-of-the-moment walk-up-at-the-state-fair decision.
That’s why we wrote what we wrote. No vendetta. No lack of caring. In fact, it is meant to convey a great deal of caring.