A Voice for Fibromyalgia?

Leah Tyler

This has been re-blogged from Leah Tyler at the Chronicles of Fibromyalgia:

Dear Pfizer,

Last night one of your commercials for Lyrica came on TV. In this ad a woman claimed her overactive nerves, caused by Fibromyalgia, gave her pain and kept her from doing the things she wanted to do in life. Obviously she went on to tout the praises of your drug, but I wasn’t listening. Instead, I was hung-up, obsessing, and ranting and raving over the use of one word, wanted. Fibromyalgia kept her from doing the things she wanted to do in life? Like rock climbing or going to an Eminem concert? Because this Fibromyalgia patient over here experienced a completely different reality. Not only did Fibromyalgia keep me from doing the things Iwanted to do, it also kept me from doing the things I had to do, like washing my hair and going to work. And I know a hell of a lot more patients sing my song than Miss Wanted To Do’s.

I have added this video as we don’t have ads for prescription drugs on TV (and I’m not sure about all other countries):

Needless to say, as a nine year veteran of Fibromyalgia, I found this phrasing offensive. In short, here’s my beef; You’re $opping up the dough off a disease that isn’t technically a disease, because nobody knows what causes it. So it wouldn’t hurt too much to throw us patients a bone, would it? Because we’re in a pickle and sure could use your help. Not only is Fibromyalgia the leading pain condition diagnosed in the USA, patient symptoms run the gamut, with a range of fluctuating severity. It affects everyone differently, and to make it even more convoluted, the treatments do, too. Please understand I am an educated consumer. In no way am I holding any pharmaceutical company responsible for sourcing the cause and cure of this mysterious ailment. And I’m well aware of how expensive the process of developing a drug, testing it, and bring it to market actually is. I’m even hip to the efforts your company invests in regarding Fibromyalgia awareness and cause advancement. But maybe it’s because of these reasons I’m actually pissed at you.

I know you pay a pretty premium for the advertising, but as of right now, Pfizer, you are the voice of our illness. Countless patients have lost their ability to function from Fibromyalgia, along with their jobs, families, friends and homes. Fibromyalgia is a devastating reality hotly debated in the crossroads of modern and psychiatric medicine, yet nobody can deny the number of patients is only growing larger. As the only other source of the word “Fibromyalgia” to many people in our society, other than ‘strange Aunt Sally who doesn’t like to leave her house’, you would do the aforementioned injustice a world of good if the chick on the Lyrica commercial said had. ‘Fibromyalgia kept me from doing the things I had to do in life.’ It would give millions of people some much-needed validation.

Thank you for your consideration,

Leah Tyler

I’m probably looking at this from a different point of view than most: I have been trying to encourage all of us, via this site, Facebook and Twitter, to become a voice for Fibromyalgia by sending emails, sharing posts or tweeting; and, then, on May 12th, lighting up their home with purple bulbs (this part is the only bit that may require some physical exertion). (Don’t know what I’m talking about? Check this out.) However, due to the very nature of our condition, it is so difficult to get many of us to actually do any of this…so, yes, it is sad that, despite how hard some of us try, Lyrica ads are the only voice for us!

 

Int Fibro

Seeking Participants for Lyrica Study

University of Utah Recruiting Fibromyalgia & FM/CFS Patients for Pregabalin Biomarker Study

The Department of Anesthesiology at the University of Utah, Salt Lake City, announced July 10 that it is seeking participants for a study to investigate Lyrica’s “effects on blood biomarkers” in patients with fibromyalgia or FM & chronic fatigue syndrome (ME/CFS).

Lyrica (pregabalin) is a prescription drug marketed by Pfizer that gained FDA approval in 2007* for treatment of fibromyalgia.

Study Details

According to the July 10 blood biomarkers study announcement:

  • Researchers hope to learn more about why Lyrica is effective for some patients and not for others.
  • Volunteers with fibromyalgia (FMS) or chronic fatigue syndrome and FMS who are NOT currently using Lyrica are needed to participate in this IRB-approved trial.
  • Eligible volunteers will receive Lyrica for five weeks and a placebo for five weeks, and will be compensated for their time.
  • For more information, contact Andrea White (andrea.white@hsc.utah.edu)

* As Pfizer’s Lyrica patents begin expiring, in October 2013, the $3.4 billion annual Lyrica market will be opening to ‘generic’ (generally lower price – YIPPEE!) versions of the drug, and as of July 5, the FDA approved marketing of a generic pregabalin product by Lupin Pharmaceuticals.

Time to Collaborate with the FibroCollaborative Working Group

Forget GPs who don’t know anything about Fibro – we can now help them (although it is much more reassuring when they know their medical stuff)!

Four fibromyalgia specialists – Lesley M Arnold, Daniel J Clauw, L Jean Dunegan, and Dennis C Turk – have developed an educational framework that primary care doctors can use as a guide to best practices in fibromyalgia case management. Yippee!

The guide – A Framework for Fibromyalgia Management for Primary Care Providers – was published in the May 2012 issue of Mayo Clinic Proceedings.

Although aimed at GPs. the guide is written clearly and succinctly enough to help us inform ourselves as it educates and guides our doctors.

Special features include:

1. A flow chart of key FM case management tasks and objectives.

2. A table of basic pharmaceutical therapy guidance – e.g., dosing considerations and possible outcomes/implications for each FDA-approved drug option mentioned.

3. Similar information regarding non-drug therapies.

4. Links to educational resources that are helpful to inform patients;

5. And, for physicians, links to 45 footnoted sources in the medical literature that provide ‘evidence-based’ background for many aspects of fibromyalgia and FM patient care discussed in the guide.

The new Framework for Fibromyalgia Management for Primary Care Providers is part of the FibroCollaborative Working Group’s 2010 Roadmap for Change – an initiative sponsored by Pfizer and supported by representatives of more than 20 fibromyalgia medical/professional and advocacy organisations across the US.

Stand up, guys, and be your own advocate! You deserve the best treatment available!