Restless Leg Group Boycotts Consumer Reports
7 CommentsBy Ed Silverman // November 14th, 2007 // 8:42 am
The advocacy group, which receives subtantial support from Glaxo and Boehringer-Ingelheim, is outraged by a video just released by the consumer group. That video, which we wrote about yesterday, debunks a TV ad for Glaxo’s Requip. The effort is the first in a new monthly series in which Consumer Reports debunks some of the claims in a drug ad.
In the debut, the consumer group’s Jamie Hirsh chides the ad for describing symptoms that are so vague that almost anyone may suffer from RLS, but she does note the condition is real. And she offers a nearly sentence-by-sentence critique. For instance, a doc’s instant answer to the RLS problem is Requip. Then, however, the ad pauses and Hirsch says: “What he doesn’t mention is that before turning to medication, there are easier and cheaper options to consider.†Take a look.
But in a letter to the consumer group, the foundation’s excecutive director, Georgianna Bell, offers her own harsh critique of Consumer Reports for “disregarding the nine million Americans” who suffer from RLS. “As I watched this video you called “entertaining†and “fun,†I couldn’t think of two words that would describe what I watched any less. It would have been one thing if you presented information in a professional and appropriate manner, but instead, you poked fun at a condition that at least 3% of the U.S. population suffers from.”
The video, she goes on to write, “was filled with poor attempts at humor and entertainment—attempts that I and the members who jammed my email inbox this week, found insulting.” So Bell is canceling her subscription and the RLS website has an ‘Action Alert’ page that displays the 800 phone number others can call to cancel their subscriptions.
Call it Restless Sensitivity Syndrome?
Hat tip to Pharma Marketing Blog
Marie
I enjoyed the consumer reports video. I don’t think anything Jamie Hirsch said was out of line. It’s true that the symptoms described in the Requip ad are pretty vague and could apply to almost anyone. Who hasn’t had times where they desperately felt the need to move rather than sit still? Spend a day sitting at a computer, and you’ll develop the symptoms for RLS, simply because your body wants to move around and burn off calories. It’s natural.
Really Restless
Good grief!
In my opinion, the Requip ads have caused more ridicule of those who actually have “moderate to severe” RLS (I am in that category and it’s nothing like the “natural” restlessness caused by sitting at a computer all day) than the Consumer Report video ever will. It is a real neurological disorder which can be disabling, and medications like Requip and Mirapex have been a godsend for many (but by no means all.) But CR, and many other critics, correctly observe that many of the pharma ads describe the condition in such broad and vague terms that they have caused RLS to “progress” from one of the least recognized disorders to the most ridiculed one. And the RLS foundation’s reaction is encouraging more ridicule.
I know from personal experience how much hell RLS can cause, and how difficult it can be to get an accurate diagnosis, let alone effective treatment (the totally baseless “treatment” recommended by the physician who first diagnosed me: eat a banana and drink tonic water before going to bed.) In its early days, and without pharma funding, the foundation provided a much needed service in raising awareness among both patients and physicians that RLS is a real condition and that drug therapy (but not necessarily the dopamine agonists like Requip) can bring dramatic relief. But the diagnostic criterion (http://www.irlssg.org/RLSMB2005pf.pdf) is much more specific, and narrow, than what is suggested by the pharma ads, and Requip and Mirapex are only approved for “moderate-to-severe†RLS. If the ads accurately portrayed the symptoms in this relatively small group, they might also contribute to raising awareness.
Instead, I think that the ads, and the RLS foundation’s overly defensive response to the the CR video, encourage the growing popular belief that RLS is more a marketing gimmick - or a joke - than a real, sometime severe, medical disorder.
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Lisa Lindell
I agree with the previous poster, regarding the RLS Foundation’s overly defensive response. Where does RLS Foundation get their major funding from? We are the most heavily medicated nation in the world. Instead of seeking alternatives, patients want the “purple pill” they saw on tv. A physician told me recently her patients get angry if she doesn’t write a prescription for something following an office visit. It validates their disease. I hope Consumer Reports keeps airing these ads and I hope RLS’s sour grapes serves only to draw more attention to the ads so consumer’s are armed with information.
Gracie G
One word: caffeine . I had this problem — and can reproduce it at will by consuming caffeine three days in a row. I found out about the caffeine connection in a book about folk remedies. I read an article by someone recommending drugs to solve RLS. I wrote her and asked her why she never mentioned just quitting caffeine. She wrote me back that she knew of the connection between RLS and caffeine, but that most of her readers would prefer to take drugs. I don’t think so. I think most people would prefer to know the truth and be able to make informed decisions.
John Berry
RLS has been proved to be a genetically caused problem, and the consequences of having it are potentially life-threatening to the sufferers and others around them, so it is not something to make fun of. It also causes huge economic losses, because sufferers do not sleep and therefore are accident-prone and cannot perform their work properly, especially if it requires good judgement skills.
I have had it for approximately 50 years, and until the last 10 years never got more than 4 hours’ sleep a night, and often none at all. That eventually led to a life-threatening depression, which led to diagnosis of RLS after much beating about the bush.
I used to have to drive about 20,000 miles a year: imagine the danger to myself and others on the road caused by doing that on less than 4 hours sleep a night. I would drive hundreds of miles in a stupor, interrupted by brief periods of real sleep. Since my 20s I had trained myself to veer to the right when falling asleep at the wheel, so that the sound of gravel hitting the axles, or the rumble strip, would wake me up. I have fallen asleep at 65 mph in rush hour traffic on the freeway, and woken up to find myself inches from the crash barrier. At the age of 19 I even fell asleep on a motorcycle, with predictable results. Needless to say, family, friends and co-workers were afraid to travel with me. Among those 9 (or more likely, many more) million people in the US with RLS, there must be many people operating heavy or dangerous equipment and long haul trucks. Think about the risk that causes to YOUR life, especially if the people involved are so afraid of ridicule that they don’t seek diagnosis, which was my case for 40 years.
So, anything that spreads the word that this is a real disease is good. Anything that ridicules it is bad. There are widely varying degrees of severity and “treatability”, but the first essential is to get people to a knowledgeable doctor.
I remember the days when, if a young woman had what was then called “female disease”(yeast infection), 90% of all doctors would say “Have a baby and it will go away”. To a male doctor (and they were mostly male) the symptoms sounded trivial. In the case of my late wife that attitude eventually resulted in a great deal of pain, some painful operations, and possibly sterility. It would be regarded now as an unprofessional, condescending and, probably, legally actionable attitude. That is exactly where we are with RLS now, though, as “Really Restless” pointed out.
You're missing the point
There’s no doubt that pharma ads require a healthy dose of skepticism and have proliferated out of all imagining. And, Lisa has a valid point that Americans reach for pills for minor issues far more readily than they should. I’m a family member of someone with severe idiopathic RLS and neither of is upset that Consumer Reports (CR) is taking those companies to task as they so richly deserve to be, or even that the RLS ad was chosen to illustrate this. It *is* vague, and as “Really Restless” notes the symptoms it illustrates *aren’t* the severe ones that would usually require medication. If CR had focused on those clear shortcomings and the whole notion of direct to consumer drug advertising vs medical education there wouldn’t be this controversy.
However, CR has gone about it all wrong. They say their focus is pharma ad practices but with this video they bash RLS as much or more. Along the way they’ve done a great disservice to RLS patients and families, CR’s reputation in the medical community, and the consumers they claim to serve.
I have no doubt that some people enjoyed the video- it was funny in a snarky, stick-it-to-the-big-boys way. But that leads to the heart of the point people are making when they object to it: the way it was done makes fun of the disease, not just big pharma’s ad practices. That some people see nothing wrong with it indicates to me that the RLS Foundation and the many people objecting to the video have a reasonable concern about how misleading it is. Whether you agree with their boycott or not I would hope you could at least consider that people may have a point and not just dismiss them as oversensitive kooks.
My family’s beef was and still is with the CR video’s focus, tone and errors. These problems and CR’s continued refusal to regroup and rethink the way they present this make their video series so far little better than the pharma ads they decry. Just a few examples…
To start with the video isn’t called “Relief from Drug Hype” or some such- it’s titled “Relief from Restless Leg Hype.” The description: Do you have “restless legs syndrome” or have you just seen too many drug ads? They follow up with bashing in the form of Ms. Hersh’s mocking, sarcastic, tone and delivery during the ad deconstruction (i.e. “Oooh a mystery. Sounds serious. [mocking tone] The real mystery? What the heck is restless legs syndrome anyway?”[scoffing face and voice] ; “Aaah, note the use of impressive initials. [more mocking tone] RLS sounds official doesn’t it?”[smirk]).
CR falls down on some facts (i.e. the term “RLS” *is* the official name; the percentage given as *total patients affected* is in fact what experts feel is the incidence of *most severely affected*- the ones who would need medicine) and engages in double standards (they propose alternatives instead of medication but doesn’t list them for review in the video even though it faults the ad for not doing it.)
Finally, the quick aside acknowledging RLS is real and for many a serious illness amounts to little more than CYA, and is far outweighed by the rest of the presentation. Consumer Reports can and should have done much better. Worse, the glib tone, poor focal choices and factual errors took away from the important information they were attempting to present. Advocates, patients and family members told them so, and plenty of medical practitioners have, too.
Finally, for anyone who thinks primary RLS symptoms are somehow similar to caffeine jitters (BTW- caffeine makes primary RLS *worse*- it doesn’t *cause* it), sitting too long or some other daily living issue - I can only hope for your and your families’ sakes that neither you nor someone close to you ever develop the intense, painful, disruptive sensations that characterize the most severe forms of RLS (and numerous other neurological disorders). If that time ever comes you may look back on this and wish you’d thought twice before being so glib about it.