TOUCHED BY LYME: "Under Our Skin" producer says cronyism and conflicts of interest have stymied Lyme research
Kris Newby, senior producer of the awarding-winning Lyme disease documentary, recently addressed the Institute of Medicine's listening session for "The State of the Science" of Lyme and other tick-borne infections. She observed that Lyme research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last 20 years–while we still have no reliable testing and no effective treatments for patients who fail the IDSA protocols.
The Institute of Medicine, part of the National Academy of Sciences, is examining the “state of the science” regarding Lyme disease. In April, the IOM heard from various scientists. Recently, the IOM committee held the second of several “listening sessions” via telephone conference call, which allowed Lyme patients and advocates to give input.
What follows are remarks from Open Eye Pictures Senior Producer Kris Newby.
My name is Kris Newby, and I’m the Senior Producer of the award-winning documentary on Lyme disease, UNDER OUR SKIN. I am a science writer by profession, with a BS in engineering/premed from the Univ. of Utah and a Masters in engineering from Stanford.
While filming UNDER OUR SKIN, I spent four years trying to understand how and why Lyme disease research went off track. My investigation involved hundreds of interviews with researchers, clinicians and patients, as well as an extensive analysis of grants and the conflicts of interest of the researchers receiving those grants.
In my three-minute slot, I’ll suggest some science areas for the committee to pursue as it sets the course for research.
But first, I’d like to start off with a quote from Dr. Willy Burgdorfer, the NIH Scientist Emeritus who discovered the organism behind Lyme disease. While we were filming at his home in Hamilton, Montana, he told our film crew:
“The controversy in the Lyme disease research is a shameful affair, and I say that because the whole thing is politically tainted. Money goes to people who have for the past 30 years produced the same thing — nothing.”
I believe the top priority of this committee should be to enlist a greater diversity of researchers and Lyme-treating clinicians to help set research priorities.
Lyme disease serves as an excellent case study on how cronyism and conflicts of interest can lead to stagnation in medical research.
This research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last two decades. Collectively, their university labs have received over $130 million dollars in government grants since 1990. Over half of these grants have gone to only two universities, New York Medical College and Yale, and a disproportionate amount of the grants have been used to support these researchers’ personal interests in tick-borne disease vaccines and tests. For example, New YorkMedicalCollege researchers alone have founded 5 test/vaccine companies in the last few years.
Looking at the state of Lyme disease today, 20 years later, we still have no reliable testing and no effective treatments for the large percentage of Lyme patients who fail the IDSA protocols.
So, for your workshop on Lyme science, I say you urgently need to bring new ideas to the table, by enlisting the following researchers:
Dr. John Aucott of Johns Hopkins, who is identifying early Lyme disease serum markers to help develop tests that will work during the first month of infection.
Dr. Ben Luft of Stony Brook, who is working to identify which Lyme strains are the most virulent in different geographic regions, because our current FDA-approved Lyme tests only look for one of 120 known strains.
Dr. Eva Sapi of the University of New Haven, who is investigating the role of biofilms in allowing Borrelia to create persistent illness.
Dr. Karen Newell of Texas A&M, who is working on a novel genomic strategy for overriding Lyme’s ability to disrupt the immune system.
Dr. Brian Fallon of ColumbiaUniversity, who is developing new criteria for diagnosing late Lyme.
Dr. Cheryl Koopman of StanfordUniversity, who is working to define symptom clusters to aid in the diagnosis of Lyme disease.
And finally, I feel it’s important to get input from the many community-based Lyme clinicians who are on the bleeding edge of treating the chronic manifestations of the disease.
Thank you for listening.
To read testimony from other patients and advocates, see the Touched by Lyme blog.