Henry David Thoreau
This post is about our patients and their questions.
It is about the honesty of our profession.
Roy Poses at Health Care Renewal drew attention to an excellent article in an obscure media source, the Berkshire Eagle (located in the Bershire mountains of Massachusetts). The reporter, Barbara Quart, experienced something of a personal odyssey after attending a medical research convention. My interest in her story was enhanced by the fact that the meeting she attended was the 7th International Osteoporosis Symposium in Washington, D.C. This is exactly the sort of high-profile osteoporosis meeting I would previously have attended with some frequency. She writes well about my colleagues and the integrity of my clinical speciality. Her thought provoking article is reproduced following my comments.
As a profession we have a long and effective history of dealing with critics. We are of course scientists. We sell our services under the banner of science. We promote the wares of industry under the banner of science. So, when Prince Charles addressed the World Health Assembly in May 2006 to argue that homeopathy should be offered as part of "integrated healthcare" we could respond with ease. Anticipating his speech, we in "scientific" medicine struck back with an open letter expressing concern about the use of "unproven or disproved" treatments, and the need to reserve NHS funds for "treatments that are based on solid evidence". So much so good.
The problem we face is that the most important patient criticism of our profession is not about "alternative" medicine or homeopathy. Critics strike at the core of what we do. Their questions are about science. They question the quality, transparency and honesty of our science. And they do so with good reason. We ignore these patients and these questions at our peril.
Some of these individuals are patients. Others have lost family members only to discover that information about medicines had been hidden with the collusion of regulators. The questions they ask and the evasive dishonest answers they receive speak volumes. They have asked serious and pressing questions of doctors, companies, regulators and governments. I have watched with shame as they have received "answers" which have no scientific or linguistic meaning. The answering reveals a leadership of our profession that has lost its way. It reveals bullying appearance-based regulatory systems in which box-ticking and red tape trumps the need for scientific or personal integrity. It reveals that concerns raised about highly placed individuals are obscured by a network of powerful colleagues.
There are no open letters of concern about "solid evidence" this time.
It is worth reading the careful writings and correspondence of some of these root strikers. Why are we as doctors not asking those same questions, or teaching our students anything about real integrity? Perhaps we are fearful of speaking out for honest science. The questions that need answering are obvious ones. When patients lose trust in the integrity of the science upon which they depend, we may never be able to recover our status as a profession.
As Roy poses writes:
"if physicians don't give up the "nifty perks," and appearances in the "satellite sessions" that "subtly but unmistakably sell the drug,", an outraged public will and should take harsh measures to make sure we do give them up.
Here are a few root strikers. Just ordinary people asking ordinary questions:
And that excellent article by Barbara Quart about my bone colleagues is below:
Big Pharma is big dog at symposiumEarlier|Later|Main Page
By Barbara Quart (Original Article)
May 28 2007 NEW YORK LATE LAST month I attended the 7th International Osteoporosis Symposium in Washington, D.C. I thought I'd learn a lot that I could then pass on to other older women in the Berkshires, many as little conscious of osteoporosis as I had been, and I hoped to get clearer what to do about my own diagnosis, and the urgently prescribed medication for it, which I have refused for a year now.
The event was basically a five-day non-stop education — some might call it a fancy sales job, or even indoctrination — by MDs for MDs (also physical therapists and other health professionals). From 8 a.m. to 9 p.m., talks and panels, lots of exciting information, in grand hotel ballrooms. All meals provided — dinners especially nice, supplied by the drug companies — plus nifty perks like a handsome tote bag emblazoned with "Lilly" (maker of Forteo, scariest of the drugs), and a beautiful pen inscribed "Fosamax," the blockbuster seller. A very different world from the pretzels and chips and cheap white wine of my own decades of university English literature meetings. I feel grateful now, thinking back, that one couldn't be for sale in my profession.
After I came home I thought for a while that things seemed clearer. Just about everyone who spoke or whom I spoke to seemed of one mind: this is a really bad disease, undertreated, it desperately needs to be publicized, diagnosed (give a DEXA scan to every woman over 65), and medicated, or it will wreak devastation. And I heard about several memorable instances of osteoporosis-caused spinal collapse, hip collapse, chronic horrible pain, hideous operations.
So my first draft of this article read like the NIH ad in the recent Sunday Times Magazine devoted to older women. I crammed it full of data, carefully defining the disease (bone thinning, especially after menopause), listed risk factors (like family history and smoking), noted how men get it too but later and to a lesser degree, urged kale and yogurt, heavy vitamin D3, exercise overseen by a really skilled physical therapist (working with amazing Jill Esterson of Great Barrington was the best thing I did this last year).
I couldn't however share the leadership MDs' enthusiasm for the drugs as good, safe, effective; nor their repeated deploring of "non-compliance" (naughty patients who drop their meds). The scolding of the "non-compliant" seemed to have priority at the symposium over the exciting talks by research scientists, and no speaker dealt with why so many people go off these drugs or are reluctant, like me, to take them in the first place.
There was a giant image of jaw necrosis: the white patch of exposed bone in the mouth from taking a bisphosphonate (Fosamax or Actonel) — though no mention of the horrific pain, or how some cases heal but others don't, and for those there is no help. And little or no mention of esophageal problems, from heartburn to severe terrifying esophagitis. Nor leg pain, eye pain, other "adverse events."
The tone was always upbeat, a kind of beating the drum, and the line between the drug companies and the MDs uncomfortably unclear. True, the dinner panels are called "industry sponsored satellite sessions" — but the same leadership MDs who are major speakers during the day, and whose names keep appearing on the important research in the major medical journals, are the same ones on the evening "satellite" sessions that subtly but unmistakably sell the drug — Forteo, Actonel, Fosamax — sponsoring the session.
Health professionals I respect argue that osteoporosis is being hyped to create a massive new market to take over where the disastrous Hormone Replacement Therapy left off, all the money it generated vanishing. True or not, money weaves through all of this in disconcerting ways.
Before I left for Washington, I stumbled upon an on-line story in Slate about two Sheffield University (England) researchers conducting clinical trials of Actonel (second in sales to Fosamax) for Proctor & Gamble for $250,000. But P&G took away the final data, denied them access, wanted to ghostwrite the conclusions for publication under their signatures.
One of the scientists, Aubrey Blumsohn, refused and insisted on seeing the data first, only to find that 40 percent had been removed. This a year after medical journal editors "warned that growing industry interference with academic research (from study design to data analysis and publication) was threatening the objectivity and trustworthiness of medical research."
As former New England Journal of Medicine Editor Marcia Angell, MD of Harvard Medical School and author of a book on the subject, states that drug companies are "involved intimately in every detail of the research" for new drugs, and "they design the research so that their drugs look better than they really are." How could one ever again trust any scientific study, in however reputable a journal? What won't I know about?
So in my own looking for some truth I could rest my decision on, I discovered that even the truths I thought I already had are probably not trustworthy. Compromised doctors. Compromised data. Flying blind indeed.
So perhaps it's not surprising that what stays with me most from the symposium is the only critical voice I heard in five days, a gray-bearded man who spoke with quiet grace after the final session. An orthopedic surgeon from a small town near Pittsburgh, he said he feared we are walking into yet another medical disaster of huge proportions and the people treated will be the ones who will pay the price. He himself prescribes these drugs because he feels something must be done to intervene with continual bone loss in his elderly patients. But it will be another 15 years before we know what we're doing. When you take this medication, he said to me later, you should see yourself as being in yet another clinical trial.
Finally, I contacted the medical consumer advocate whose sanity in print I've long valued. BMD numbers are critical, she says, and you must assess what exactly the drug will do for you. How effectively does it prevent fractures? Percentages can be made to look large but may actually be very small, barely more than the placebo effect, perhaps the same as the chance of an esophageal ulcer. Is that worth the risk? The whole industry is trying to terrify you, she says.
My own conclusions? I feel I must take that pill, but I will do so angrily.
I am angry that this richest of American industries uses its vast wealth far less for research to make better, less dangerous drugs, than to buy off doctors; to plaster misleading ads everywhere; to dispatch armies of salesmen and lobbyists; and to manipulate and thus destroy the meaning of scientific research results. Still, as I write this, stories and editorials are suddenly erupting in the Times about MD/drug company collusion; and Vermont's Bernie Sanders eloquently attacked Big Pharma in the Senate itself as the very worst of a long list of the most powerful, greediest special interests in America.
So maybe there's hope.
But for now, dear reader, sorry, but you're entirely on your own.