Letter to National Guidelines Clearing House
Lyme Disease Education & Support Groups of Maryland
January 31, 2012
Vivian H. Coates, MBA
Vice President, Information Services and Health Technology Assessment
ECRI Institute
5200 Butler Pike
Plymouth Meeting, PA 19462-1298, USA
RE: Lyme Disease Guidelines- Infectious Diseases Society of America
We have been advised the Lyme disease guidelines, published by the Infectious Diseases Society of America (IDSA), will remain listed on the National Guidelines Clearinghouse (NGC) until 2015. We want to go on the record as strenuously objecting to this course of action.
The outdated guidelines currently reflect less than 1% of the available scientific and medical literature on Lyme and tick borne diseases, with all references cited predating 2006.
As taxpayers and citizens we expect results and conclusions from current government funded studies to be available for consideration when organizations are formulating our medical diagnostic and treatment protocols. We don’t expect medical discoveries and advances to be shelved, especially while people are suffering from a disease that is poorly understood and has no known cure.
Funding for medical research has contributed to creating the huge budget deficit for our country. When we do not take advantage of the final work products we create, the $60.1 million dollars spent for Lyme research in 2009 and 2010, for example, can be considered a total waste of our valuable resources. No one benefits when advances in science and medical technology are ignored.
The 2006 guidelines also do not include any of the over twenty changes recommended by the legally mandated anti-trust review panel. To note- the panel, which included IDSA members and its own past-president, was specifically NOT empowered to revise or update the 2006 IDSA Lyme disease guidelines.
If the outdated IDSA guidelines are left to stand as is, we feel they will not offer health care providers or the public trustworthy, up-to-date recommendations regarding the diagnosis and treatment of Lyme and tick borne diseases.
In order to protect the public we respectfully request the outdated guidelines be removed immediately from the National Guideline Clearinghouse website.
Sincerely,
Lucy Barnes, Director
Lyme Disease Education and Support Groups of Maryland