TOUCHED BY LYME: “When the story of Lyme disease is written, it will be the story of patients standing up and being heard.”
11th March 2013
Sen. Kirstin Gillibrand
New York Senator Kristin Gillibrand, Connecticut Senator Richard Blumenthal and NY Congressman Chris Gibson were among the luminaries in Weill Cornell Medical College this morning for a forum on “The Silent Epidemic of Lyme and Tick-borne Diseases.”
Moderated by David Roth of the Tick-borne Disease Alliance, the panel also included:
Dr. Roy Gulick, Professor of Medicine and Chief of the Division of Infectious Diseases, Weill Cornell Medical College; Attending Physician, NewYork-Presbyterian Hospital in New York City
John McPherson, nationally syndicated cartoonist, Creator of the “Close to Home” comic, patient advocate
Dr. David Leiby, Head of Transmissible Diseases at American Red Cross
Dr. Richard Ostfeld, Disease Ecologist at the Cary Institute of Ecosystem Studies
Dr. Brian Fallon, Director of the Center for Neuroinflammatory Disorders and Biobehavioral Medicine; Director of Lyme and Tick-Borne Diseases Research Center, Columbia University
The session was streamed live. If you missed it, there will soon be a link to the video on the TBDA website. (It’s not available as I write this. Check back in a few hours. I’ll update the link when I get it.)
Senators Gillibrand and Blumenthal started the ball rolling with excellent summaries of how much Lyme patients are suffering and how the government response to this disease is woefully inadequate. Two of my favorite quotes:
(Gillibrand): “We need a better strategy than just checking our kids after a day at the park.”
(Blumenthal): “When the story of Lyme disease is written, it will be the story of patients standing up and being heard.”
A major glitch in the proceedings, to my mind, was the fact that Dr. Roy Gulick was introduced as giving “some background about Lyme disease.” In fact, Dr. Gulick presented the IDSA/CDC view of Lyme disease, delivered as if it was irrefutable fact. He was allowed to frame the issue. His remarks were NOT immediately followed by somebody saying, “That’s the IDSA point of view. Now, let’s hear from this other person, to give us the ILADS point of view.”
To clarify: I am not opposed to having the IDSA point of view included, if it’s properly labeled as such. (In the second half of the program, David Roth did point out that Dr. Gulick represented the IDSA point of view. It was an important distinction that should have been made earlier.)
