LYMEPOLICYWONK: Pam Weintraub’s CNN Article–Setting Things Straight
CNN published an editorial by Pam Weintraub that helps set the record straight in Lyme disease. I comment about how the Lyme research agenda has been hi-jacked by an insular group of researchers and why we need to include patients and their physicians as stakeholders in Lyme disease. It’s time for research and treatment guidelines that are accountable and that improve patient care.
Pam’s commentary at CNN spotlights key problems in Lyme research and treatment. The real travesty here is that research funding has gone to a small group of researchers with a preconceived mindset on Lyme for the past ten years. Researchers who pursue persistence, like Barthold, find themselves unfunded because they are on the “wrong side of the tracks” in terms of research paradigms. At his testimony at Congressman Smith’s hearing, Barthold said: “Because of firmly entrenched opinion within the medical scientific community . . .research proposals submitted to NIH that feature persistence following treatment are likely to receive prejudicial peer review in the contentious environment of Lyme disease.”
What Dr. Barthold is saying is that the peer review system for government funded Lyme disease research is broken. A comment he received to his last rejected grant application made it clear that the rejection was based on politics rather than science: “The lay public that has so far denied the validity of scientific data will misunderstand the significance of…[persisting non-cultivable Borrelia burgdorferi]…and use it as additional evidence to support the idea of treatment-resistant Lyme disease.” In the same vein, a recent grant application that was approved (perhaps in the same cycle) for Dr. Gary Wormser, chair of the IDSA guidelines panel, engendered controversy when one of the CDC peer reviewers returned his honorary stipend over perceived process irregularities.
As a result of a FOIA request and some excellent reporting by Mary Beth Pfeiffer at the Poughkeepsie Journal, we now know that the reason peer review is broken in Lyme is because a small insular group of researchers have a lock on research funding. The expose documents that CDC and NIH government employees have worked very hard with IDSA researchers to defeat legislation and other efforts to instill accountability into the research process.
Science depends on the free marketplace of ideas. Few scientists refute their own theories; their rivals do. What happens when researchers supporting one paradigm “get hold of some institutional position of power (a scientific journal, a research institute) and impose their favorite “line” of research there, leading to a dead end.” If you can successfully exclude your rivals, you have the whole playing field to yourself. But what is produced is dead-end science that does not improve patient care—you get what Congressman Smith refers to as “the lost decade” of Lyme research. You squander public trust and public funds.
Today, Dr. Wormser says “So what” to the mounting evidence for persistence. A new article by Dr. Stricker and me summarizes the 23 studies demonstrating persistence of the Lyme bacteria in animals and 27 published case reports of persistence in humans. What constitutes “good enough” evidence to treat? A decision to intervene and provide care is a value judgment based on the risk of acting too soon and the risk of acting too late. Does it matter if alternative treatments are available? Who decides? These are matters of public policy involving moral values, not science. They are matters of right and wrong. Public policy determinations need to involve stakeholders affected.
The Institute of Medicine recognizes that for guidelines to be trustworthy patients must be involved when the questions are framed, when guidelines are reviewed, and that that guideline panels must include “those affected” by their recommendations. Why? Because those affected by public policy determinations should have a voice in them. Patients also need a voice in setting the research agenda. New government institutions like Patient Centered Outcomes Research Institute recognize the importance of patient involvement in setting research agendas to achieve outcomes that matter to patients. (I serve on the Patient Engagement Panel of PCORI.) It’s time to create a “no fly zone” in the Lyme Wars by including all stakeholders at the table and instilling accountability into the research funding and guideline setting processes.
While I welcome your comments here, I also encourage you to post thoughtful comments in the comment section, where they will receive a larger audience, at Pam’s CNN article.
LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at email@example.com.
- July 15, 2013 at 1:16 pm
Travesty, is the only word I can think of. If these people only refuted our position I would understand it, but since they block any other position than theirs I can only hope that one day they are held accountable. I have been waiting five years for this to happen. I hope there is something left of me when it does.
- August 3, 2013 at 9:19 pm
Absolutely. The arrogance/ignorance of IDSA/CDC/NIH is
appalling. It is time for them to be held accountable. People
who have not been correctly diagnosed can file a civil suit
against individual ID docs; and/or a Federal Tort Claim against
CDC. The “Lost Decade” has resulted in years of needless pain
and suffering for countless individuals. It is time for Wormser,
Steere, et. al. to be held accountable. ‘So what’ doesn’t cut it.
- September 27, 2013 at 4:59 pm
Yeah, been sitting on the fence for over a decade. I, too, have lost all these years of being a “normal” mom to my kids. Spent most of the last year in bed. My HMO will not concur I have Lyme even though this was their first diagnosis, they stripped that down later with a non CDC positive western blot. Two equally decorated and licensed MD’s say I have Lyme, but that does not mean diddle when you are locked into an HMO who goes only on tests, not symptoms and breakdown of body. I do believe this is bacteria that goes dormant and has a strong relapse rate. For doctors to not notice this and solely go by test results, they are life murderers. If all it took to get diagnosed correctly is to rely on tests (and bad ones at that) we do not even require a doctor anymore. We can simply go through a drive through testing station, get our own results and find out from that how “healthy” we are. Never mind the completely debilitating pain, exhaustion, hearing and vision loss, balance issues and vertigo, cognitive and neuro problems, cardio blips, digestive paralysis, swollen joints and more. I guess to Wormser he’d just say, SO WHAT? Care went out of medical care decades ago with medicine becoming strictly business. More and more these destructive medical moguls are taking apart disease and demeaning it, making it “so what”, and their voices are carried to insurance carriers that then can deny. These guys are playing with our lives.
Just want to ask, how OLD are these original stooges anyway, and when might some young and brilliant blood be brought into the scientific ring so improvements in treatments and TRUTH will finally be seen?
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