Healthy Skepticism Library item: 6017

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Publication type: news

Cassels A.
Big Pharma holds drug and advocacy groups hostage
Common Ground 2006 Aug 31
http://www.commonground.ca/iss/0609182/cg182_Cassels.shtml

Full text:

CG : Archive : August 2006

Big Pharma holds drug and advocacy groups hostage

by Alan Cassels

In Canada, many people believe that our healthcare system is ruled by common sense, good evidence and patient-centred care delivered by helpful doctors and nurses. Thankfully, these principles underlie much of the work of people in the healthcare field, guided by the best interests of their patients.
There is increasing confusion, however, about what “real” patients actually want. More and more, I see decisions around treatments hijacked by lobby groups representing positions that are more in alignment with their corporate backers than with patients’ real concerns.
I have come to believe that disease-groups funded by drug-pushing drug manufacturers suffer from Stockholm syndrome. Remember the millionaire heiress Patty Hearst? Kidnapped by the Symbionese Liberation Army in 1974, the petite, rich girl ultimately wielded an assault rifle to help her kidnappers rob a bank, apparently having aligned with the SLA’s cause. I think of Hearst whenever I see patient-disease groups held hostage, identifying with the needs and goals of their funders. Like Patty, they come to believe that their very survival depends on it.
Is this what is happening with industry-funded advocacy groups? Many patient-groups openly confront the various controversies around the disease in question, asking hard questions about the possible treatments and digging into data to help patients make better sense of the treatments’ benefits and dangers. And we need them.
At the same time, those same patient-groups often act as if they are operating under some Olympic-style motto, demanding, more, better and faster drugs, diagnostic tools or treatments. I immediately become suspicious when the hostages begin adopting the tone of their funders. When they start pushing for faster and newer drugs for example, instead of demanding better safety, effectiveness and affordability, they’ve essentially picked up their captors’ weapons.
Much confusion reigns because funded patient-disease groups rarely disclose the source or amount of money they receive from corporations. A recent study published on BiomedCentral.com by Andrew Herxheimer, creator of (www.dipex.org) – an excellent web-based source of patient experience about healthcare – examined advertising and disclosure of financial support by drug companies on the websites of major patient organizations. His team found that “… financial reporting and disclosure of donors varied substantially” and that corporate donations were itemized only about 20 percent of the time. They concluded: “Patient-organization websites do not provide enough information for visitors to assess whether a conflict of interest with Pharma exists.”
Sometimes Pharma’s fingerprints are obvious; a recent event in Calgary this past summer highlights what I mean. A seminar advertised on local radio invited listeners to a free evening meeting to discuss the subject of chronic pain. While much of the seminar orbited around pain, it seems that the real goal was to get patients worked up so that they’d write and lobby Alberta MLAs to fund newer drugs coming down the pipeline.
In these obvious, industry-funded exercises, one of the primary punching bags is Health Canada’s Common Drug Review Directorate, a new federal body mandated to review the cost effectiveness of new drug treatments. If you want to know which side of the fence a patient-group sits on, you need only examine what they think of the CDR. The drug companies and their Astroturf groups loathe the CDR. Why? Because the CDR does an outstanding job of ensuring that evidence supersedes politics in decisions about the value of new drugs.
There are many industry-funded groups, such as the folks behind the pain seminar in Calgary, pushed by their funders to make a case for the newest drugs. The “action group” involved in the neuropathic pain seminar (www.nepaction.ca/organization.htm) is run by a PR firm hired by a company that markets, surprise, surprise, a new neuropathic pain drug.
Some patients who suffer from neuropathic pain would definitely benefit from access to a new drug because not all neuropathic pain treatments work for everyone. But, who would you prefer to assess the real value of a new treatment: the hostages or the negotiators? Perhaps that is why I am biased in favour of the Health Canada Common Drug Review. When it comes to decisions about the value of new treatments, I prefer independent evidence over camouflaged, corporate-sponsored “awareness and action.” I would rather the hostages put down the assault rifles and show a little allegiance to the fair-minded negotiators instead of their captors. Go ahead. Call me old-fashioned.
The drug companies see patient-groups as vital allies in advertising both the disease and the treatments. As their own marketing literature informs us, what better way to camouflage one’s actions than to get a sick and captive audience to lobby on your behalf? There is no doubt that patient-advocacy groups, which cover every illness under the sun, play an important role in representing the views of patients and consumers. Let’s take a closer look at a couple of high-profile groups in Canada – those dealing with Alzheimer’s and arthritis – to see how they stack up.
While there is a lot of good stuff on their websites, given that both of these groups take money from pharmaceutical companies, are they able to provide balanced information about diseases and treatments to their members? When talking about drugs, do they provide the three vital pieces of comparative information all patients need to know before considering any treatment: safety, effectiveness and cost? Do they highlight important safety warnings, government advisories, recalls and so on? Let’s take a closer look.
There is some room for optimism when viewing the Arthritis Society of Canada website (www.arthritis.ca). The homepage announces a recent advisory from Health Canada, which warns that Remicade (infliximab) is linked to a rare form of cancer in children and adolescents taking the drug for Crohn’s disease. Scanning the advisory, one realizes that while it is not a complete report by any means, at least there’s some comfort in knowing that information about safety is given some attention.
For information about specific drugs, you have to look at the “Tips for living well” section under “Understanding medications,” where, unfortunately, the same kind of banal drug information that the pharmacist issues upon dispensing a prescription greets visitors to the page. Nothing about comparative effectiveness, safety and cost, but lots of “Go ask your doctor.” Hmm.
What about recent scandals or controversies? Anything about the litany of warnings, safety advisories, scandals and lawsuits related to the coxibs – drugs like Celebrex, Vioxx and Bextra? Not much. Instead, you get a taste of the propaganda that has propelled the marketing of these drugs: “…the Coxibs are much safer on the stomach than traditional NSAIDs…” (non-steroidal anti-inflammatory drugs). Watch out for flying pigs.
In terms of safety issues, I had hoped to see a profile of Celebrex (celecoxib), specifically the “Dear Healthcare Professional” letter of September 21, 2005, issued by the drug maker, warning patients with ischemic heart disease, cerebrovascular disease, or congestive heart failure of the dangers of taking this drug. Hmm, nothing obvious. That seems unusual given that tens of thousands of Canadians are still taking Celebrex. Nor is there any profile related to the “Dear Healthcare Professional” letter of January 13, 2006, warning of “Hepatitis B Reactivation” associated with drugs like Enbrel (etanercept), Humira (adalimumab) and Remicade (infliximab). Despite my optimism, on safety warnings alone, the arthritis site is a washout.
I had expected to see a lot more about the recent scandals that surrounded the approval, funding, promotion and uptake of Vioxx, a “breakthrough” drug enthusiastically lauded by advocates a few short years ago for arthritis pain relief, but which now holds the record for the world’s biggest and most deadly drug disaster. Alas, nothing there either. I can’t think of any better example than Vioxx for why consumers need impartial advice about pharmaceuticals from independent sources, rather than the enthusiastic promo work done by patient-groups held hostage by Big Pharma.
Similarly, patients or caregivers looking for balanced information about various drugs to treat Alzheimer’s disease at the Alzheimer Society of Canada’s website (www.alzheimers.ca) won’t find any information about the comparative cost, safety or effectiveness related to these drugs. The information provided for each drug is as brief as the information found on the sheet handed out by the pharmacist: how to take the drug, expected side effects and so on for drugs such as Aricept (donepezil), Exelon (rivastigmine) and Reminyl (galantamine). The website’s brief statement about the most popular Alzheimer’s drug, Aricept, reads, “This information sheet is a brief description and summary of information about this medication. If you have any questions about Aricept, ask your doctor or pharmacist.” Boy, that’s helpful.
For a different take on Alzheimer’s, you might try the US-based Consumer Reports Best Buy Drugs at (www.crbestbuydrugs.org). In the “Featured drug reports” area under the heading “Drugs to treat Alzheimer’s disease,” one reads: “They are not particularly effective. When compared with a placebo, only 10 to 20 percent more people taking an Alzheimer’s drug seem to benefit at all.” Quite a contrast to the bumpf put forth by the Alzheimer Society. Hint: Consumer Reports doesn’t take any money from the pharmaceutical companies.
I search the Alzheimer Society website for any sign of the clinical trial where 11 Aricept patients who had vascular dementia died, compared to no deaths in the placebo patients. I find nothing. No word either on the warnings issued about the Alzheimer’s drugs. Hmm.
I have no doubt that much of the web-based information put out by industry-funded groups serves patients and caregivers well. There is often information about community activities and self-help tips that is extremely helpful. Yet when it comes to information about drugs and treatments, why do I feel they are delivering only half the story, i.e., the good half? Why is there a noticeable lack of honesty about the safety, effectiveness and costs associated with the drug treatments they mention?
Someone please tell me that these groups are getting vast amounts of Pharma money and this is somehow subtly shaping the quality of the drug information found on their sites. I hope they are at least getting rich from under-serving their clients this way, but somehow I don’t’ think that’s the case.
At the end of the day, I feel that even a tiny bit of drug money affects the message of patient-disease groups who shape drug information and lobby for coverage to please their captors, and those pharmaceutical companies are likely getting a very good deal buying the credibility of these groups. Public money may be lacking and donors cheap, but is there any solution to patient-groups held hostage by the drug industry?
An interim solution is for those patient-groups to admit there’s a problem and start producing ethical guidelines around their conduct with their funders. Consumers should be aware that any patient-disease group getting Pharma money is not going to provide balanced information about drug products. I haven’t seen it happen, but I’m willing to be convinced.
A better, long-term solution? Wean oneself off the drug money. Do less of what you do, but do it honestly and with integrity. Provide people with the straight goods about their diseases and drugs. I bet you could do a pretty good job of living Pharma-free if you gave it a chance.
In Canada, we don’t have any federal regulations or anti-kickback laws governing pharmaceutical interaction with patient-groups, but maybe we need them. Until the funded patient-disease groups eschew drug money and show us they are serious about taking up arms for their patients instead of their funders, like Patty Hearst, they deserve to be treated as spectacles, possibly deserving of sympathy and pity, but nothing else.

Alan Cassels is co-author of Selling Sickness: How the World’s Biggest Pharmaceutical Companies Are Turning Us All Into Patients, and a drug policy researcher at the University of Victoria. He is also the founder of Media Doctor Canada (www.mediadoctor.ca), which evaluates reporting of medical treatments in Canada’s media.