Barbara Quart’s excellent article ‘Big Pharma is big dog at symposium’ (following this comment) observing the culture of excess and hype pervading the osteoporosis symposium in Washington DC in April is a salutory reminder that despite the efforts of many, nothing has changed. The powerful osteoporosis industry still promotes lies and misinformation, not just to the consumer, but to unwary or easily bought medics as well. Well known authorities who are specialist speakers by day, then drug company reps by night are the norm at these industry-sponsored events. We need more people like Barbara Quart and the one courageous solitary orthopedic surgeon at the symposium who voiced his concerns about the potential for a major medical disaster in future from the global experimentation occurring with the potent bisphosphonate drugs Fosamax and Actonel.
Big Pharma is big dog at symposium
By Barbara Quart
The Berkshire Eagle
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. Original article.
Barbara,
Please contact me. I took Boniva about two years ago, had a terrible reaction and have been doing considerable research on bisphosphonates since then. In addition, I have been closely monitoring the Askapatient.com website where people report adverse reactions to these drugs. I believe that we can make common cause to discourage people from taking these substances, even though such efforts may come to nothing more than “spitting in the wind” in contrast to the power of the drug companies and the inactivity of the FDA.
Rhea Resnik
Atlanta, GA
Thank you, thank you for your efforts at educating people as to the potential dangers of these bisphosphonates. Like you, I refuse to take them, even although my scans show I would be a likely candidate. I have gone to several websites to check on side effects of these drugs & have been appalled at what I’ve read. I’ve also watched a friend go from being an active hill-climbing person to one who now has to use a wheelchair when going on trips & who suffers constant, severe foot pain. Unfortunately she refuses to consider that the Fosamax she has been taking for several years might be the cause and her rheumatologist doesn’t see this as a possibility either. She has been put on a host of other drugs, including a high dose of prednisone, to try to counteract the pain and is now in a catch-22 situation – trying to wean herself off the prednisone, but having to continue with the Fosamax because of the bone-weakening effects of the former. While I am no doctor, I have a feeling that the damage to her bones might be irreversible. She has seen countless specialists but no-one can give her a definitive answer as to what is the problem.
When I was in Australia a couple of years ago the issue of drug company promotion of these drugs was raised & it was suggested that the companies got their message out by targeting specialists, wining and dining them lavishly, then counting on them to spread the word to the general practitioners. It’s probably the same type of situation on the North American side of the Pacific & it seems to be working well.
I’ve been taking Actonel off and on, mostly on for the last 5-6 years. Never wanted to take it. Put it off until I was told my femur was dangerously “thin” and my spine looked a bit like swiss cheese.
My jaw bone, I’ve had 4 implants over last 2-3 years, is not “quality bone”. Again the swiss cheese analogy. Stopped taking Actonel for 6-7 months each time I had the implant procedure.
I take 800mg 4-5 times a week of calcium citrate, 2,000mg of D-3 and in the evenings, several hours after the calcium, I take 615mg. powdered magnesium thoroughly dissolved in warm water. My question is: strontium; I’ve been told that it is cumulative and becomes effective only after 3-5 years of faithful daily use. I’m desperate to get of the Actonel. This last time of 7 months off, my bone density showed a 5% bone loss in my spine.
I exercise and my diet, except for 1 cup of coffee and 1 cup of tea per day, is good. Any suggestions of what to do in a situation like mine??? Thanks for any response.