LYMEPOLICYWONK: Should the IDSA take a Tip from Toyota and Recall the Guidelines?

Byldoadmin

 

Look, car manufacturers are not at the top of the consciousness scale—they frequently put profits before consumer safety.  It’s called capitalism.  But medicine is supposed to be something different.  It is supposed to put the interests of patients first.  And, medical guidelines have a responsibility to all of the patients out there who are suffering under the weight of what a few experts with commercial interests think is “right”.  

Who cares most about patients?  Surprise.  It is the patients.  And the patients have voted.   In a CALDA survey of Lyme patients, 63% were initially treated under IDSA protocols.  68% were not restored to health.  60% of these improved with additional treatment.  And, drum roll,  a FULL 80% of patients would not elect to be treated under these guidelines.  Who do these guidelines serve?  Well, the patients in the survey do not think these guidelines serve them.  What do you think?  Drop me a line.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.

 

 

 

 

 

Similar Posts

  • LYMEPOLICYWONK: IOM Hearings—Same Old, Same Old?

    Labor HHS 2010 appropriations language directed the National Institutes of Health (NIH) to“sponsor a scientific conference on Lyme and tick-borne diseases” and mandated that the conference represent the broad spectrum of scientific views…and provide a forum for public participation and input from individuals with Lyme disease.” Rather than conducting this review themselves as an NIH State of the Science conference as anticipated, the NIH subcontracted the work out to the Institute of Medicine. Looked at in the most kindly light, perhaps they regarded the Lyme controversy as “too hot to handle” or “not in my backyard”. A less charitable viewpoint would characterize the shunt to the IOM as “forum shopping”—a way of selecting a process that is most likely to favor a desired outcome.

  • LYMEPOLICYWONK: IOM Report: ’Tis neither here nor there. Or?

    The Institute of Medicine (IOM) has released its long awaited report on Lyme disease. So should we celebrate or despair? I think there is room for a little of both. We should certainly celebrate the tone of the report, which characterizes the session as “a walk in the woods” to start dialogue and we should celebrate the contributions made by those who attended and participated, whether as patients, advocacy groups, researchers or physicians. I think these people did their very best to represent a side of Lyme disease that is not often given public voice. We should also recognize the contribution to a better process that was achieved by the three groups who pulled out of the hearing (CALDA, LDA, and Time for Lyme). This action resulted in Dr. Benjamin Luft of Stony Brook University being added to the agenda and may have also added to the “tone” of the report. What we should not lose sight of though, is that a civil tone and the inclusion of some patients’ testimony are not enough. This is a debate about science. Debates are about equal time, opportunities to rebut, and not excluding opposing viewpoints. That did not happen here. And, what the IOM left out or left unchallenged harms patients. Our biggest hits were in diagnosis, the exclusion of the topics chronic Lyme and treatment, and the complete exclusion of any physicians from ILADS. Let me drill down into the details.

  • Publication Alert: IDSA Review Hearing Report–Lipstick on a Pig

    On April 22nd, the IDSA guidelines review hearing panel rubber-stamped its Lyme disease guidelines in its final report of the hearing. Those of us who presented and attended the hearing were appalled. Sure we had our reservations about the ability of a panel stacked with IDSA members to impartially review the guidelines, but there were 1,600 pages of peer reviewed evidence that had been presented to the panel and independent scientists had attested to the persistence of the Lyme bacteria and the low quality of the tests. How could they ignore the weight of such evidence? How could they decide to leave the guidelines completely unchanged even though a panel of their own choosing was divided on the testing? To make matters worse, the IDSA then trumpeted the results of a stacked panel as "independent" in their report. Dr. Stricker and I were given the opportunity to respond to the IDSA "spin" and our letter to the editor was just published. An excerpt follows:

  • LYMEPOLICYWONK: Speak Up Now! IDSA Lyme Guidelines And Patient Viewpoints Survey Ends January 1. . .

    Since we launched this survey in early October, we have drawn over 4,800 responses. The survey will end on January 1 so I encourage those of you who have not yet responded to take the time to do so. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. This survey aims to find out what you think is important about treatment options, choices, risks and benefits. Respond to the survey and remind the IDSA that patient values are central to treatment guidelines!

  • LYMEPOLICYWONK: Uncle Sam Needs Patients to Get Healthcare Reform Right

    Recently, a group that writes guidelines asked for my input about the role of patients in the development of Evidence Based Medicine guidelines. With universal healthcare now ‘the law of the land’, treatment guidelines have become even more important. Preserving the integrity of the guideline development- process is what matters most. It is essential that patients play a role in the process that can so affect their lives. The question posed to me was why should those developing guidelines involve patients? My response follows.

  • Gooznews takes on conflicts in guidelines

    Gooznews posted an interesting commentary on guidelines, conflicts of interest in guideline development and over reliance on expert panels when there are gaps in evidence. Merrill Goozner is a health care ethicist and this is not the first entry on his blog that has caught my attention. You might want to check it out. His post is premised on the recent article by Sniderman in the Journal of the American Medical Association (recent issue), which does a remarkably job outlining the problems with control in evidence based medicine, how "opinions" of the panel members are recharacterized as "science" in the form of evidence based guidelines. Some of the comments to Goozner's post are interesting. One person responds that "Evidence-based medicine has morphed into pharma-based medicine and HMO-based medicine". I thought Goozner's post was a good opportunity to point out some of the problems with the IDSA guidelines. My comment follows: