Has Columbia University’s Lyme Research Center Sold Out to IDSA?

Has Columbia University's Lyme Research Center Sold Out to IDSA?

In 2003 the excitement was contagious.  For so many thousands of people suffering with chronic Lyme disease there was finally hope on the horizon.

Although the Lyme Research Center would not open until 2007, Columbia University Magazine wrote that year: “…Time for Lyme will continue to raise funds to establish the Columbia University Lyme Disease Research Center, the first Lyme disease research center in the United States…  U.S. Sen. Christopher J. Dodd, D-Conn., will accept the Time for Lyme Outstanding Service Award for his advocacy of national Lyme disease legislation.

Columbia University is establishing this research center to address the growing incidence of Lyme disease. Drawing on Columbia-Presbyterian Medical Center’s vast resources, researchers at the center will examine the causes of chronic Lyme disease and search for better, more effective Lyme disease diagnostic tests and treatments.

Reported by Townsend Letter in 2007:

“…Pat Smith, president of the Lyme Disease Association (LDA), hailed the Columbia center as “the first of its kind in the world devoted to addressing the multiple possible causes of persistent symptoms from Lyme disease.” Establishment of the center, Ms. Smith said, is the outgrowth of a “legal partnership” entered into by the LDA, Time for Lyme (TFL, an affiliate of the LDA), and Columbia University during the summer of 2002. Subsequently, the LDA and TFL led efforts to raise the $3 million necessary to launch a multi-disciplinary university center. Brian Fallon, MD, MPH, will direct the center’s research programs. Dr. Fallon, a specialist in neurological Lyme disease, is Associate Professor of Clinical Psychiatry, Columbia University College of Physicians and Surgeons.

“We are all excited that an academic medical center as prestigious as Columbia University has committed itself to focus scientists and the latest biotechnologies toward unraveling the problem of chronic Lyme disease,” exclaimed Ms. Smith, who noted that Columbia University “has already been at the forefront internationally in research on neurological Lyme.” Contemplating materialization of the center, she commented:

“Patients with Lyme disease, whose manifestations in some cases can be as devastating as congestive heart failure, deserve the respect, focus, and funds that Columbia University can generate.” Lyme disease, she pointed out, has become “the most prevalent vector-borne infection in the US, and unlocking the secrets of its debilitating chronic effects is urgent.”

In the same article funding and research projects are reported in an interview with the Chief Medical Officer Dr. Brian Fallon: “…All of the funding for the Center to date has come from the work of private foundations, most notably TFL and the LDA, as well as from very generous individual donors within their relatives and friends.

The Center’s “start-up” contains funds for an endowment (providing interest income annually) to support ongoing Lyme and tick-borne disease research at Columbia. The “start-up” also contains funds for new research projects, some of which have already begun. For example, we’ve hired a post-doc in microbiology, Dr. Rafal Tokarz, to work with Dr. Ian Lipkin at Columbia to apply previously unavailable molecular genetic technologies to determine whether persistent symptoms in humans might be caused by previously unidentified organisms in ticks.

Outside Columbia, we’re funding a project on proteomics (analysis of miniscule amounts of proteins expressed by spirochetes – i.e., Lyme bacteria) with Dr. Steven Schutzer at the University of Medicine and Dentistry of New Jersey. Dr. Schutzer’s study aims to identify a more sensitive diagnostic tool for Lyme disease.”

The people who gave so much money to see this center opened must be disappointed to say the least.  For anyone who has been watching the research reported there, the important work being done by Dr. Schutzer is not included.  Instead, the research being done by Dr. Alan Steere are now in the forefront, and all mention of chronic Lyme disease has been removed.

Links to LDA and CDC have replaced the previous links to ILADS, and some of the most exciting research being conducted is not to be found anywhere.

Time for Lyme changed their name to Lyme Research Alliance and are now funding projects directly related to their original mission, however the Columbia Center is still being supported which appears to be a very real marketing problem for their organization going forward.

Anyone who tries to keep a foot in the IDSA boat and the ILADS boat will end up doing the splits before getting drenched in the fall.

As Dr. Willy Burgdorfer said in an interview before his death, “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.”

Watch video here: https://www.youtube.com/watch?v=dCnrUmAPcOE

 

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2 Responses to Has Columbia University’s Lyme Research Center Sold Out to IDSA?

  1. Mark Lipset says:

    Hi Jenna,

    I actually spoke to these guys today and the girl that answered the phone (as it was not a woman), was both rude and ill-informed. When I questioned her on the price of their services, about $5000, and how that was prohibitively expensive for most people, and obviously for them only wealthy people were entitled to healing, this person got very upset at my comment. She couldn’t even tell me what services they offered, and told me that I was ignorant of the way the health care system works. I explained that I was well aware, and that their business model embodied this philosophy. Very upsetting when one is suffering, and is looking for real help, and at reasonable costs. Unless you have some money to burn, and know what you are getting into, unfortunately, I would look elsewhere.

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