Lyme Disease Groups Finally Given a Voice in the Process

Lyme Disease Groups Finally Given a Voice in the Process

Patient advocates and physicians concerned with the treatment of chronic Lyme disease finally had their voices heard at a July 30 hearing mandated by a legal settlement between Connecticut’s Attorney General and the Infectious Diseases Society of America (IDSA). 

Washington, D.C. August 8, 2009 — Patient advocates and physicians concerned with the treatment of chronic Lyme disease finally had their voices heard at a July 30 hearing mandated by a legal settlement between Connecticut’s Attorney General and the Infectious Diseases Society of America (IDSA). More than a year after an investigation by Atty. Gen. Richard Blumenthal into the 2006 IDSA Lyme Guidelines’ development revealed conflicts of interest by members of the IDSA guidelines’ panel, a new panel heard testimony on whether the guidelines required revision. Insurance companies use the current highly restrictive treatment guidelines to deny patients reimbursement for medical care.

The panel heard testimony from 18 invited presenters, including patients, researchers and physicians at the hearing, which was broadcast live on the internet and which will remain on the IDSA website for one year https://webcast.you-niversity.com/idsaArchives/. Roughly 300 pages of scientific analysis and 1600 pages of peer reviewed scientific evidence refuting the guidelines was submitted to the panel in advance of the hearing. 

"This panel heard an overwhelming amount of scientific evidence refuting these guidelines, which the previous panel had suppressed. The need to materially revise these guidelines is plain, and we hope this panel will finally do the right thing by patients" said attorney Lorraine Johnson, a former Lyme patient and Chief Executive Officer of the California Lyme Disease Association, who spoke at the hearing. 

Those who attended the hearing included the NIH Program Director, representatives of Congressman Christopher Smith (NJ-R) and Senator Christopher Dodd (CT-D), the HHS Inspector General’s office, the CDC, and the Connecticut Attorney General’s Office. "We are heartened to have the science supporting patients’ interests finally heard and gratified that this issue has sparked interest among federal legislators and agencies," said Pat Smith, President of the national Lyme Disease Association whose daughters have suffered with Lyme disease. 

Opposition to the IDSA guidelines has been growing− the International Lyme and Associated Diseases Society (ILADS) and the Association of American Physicians and Surgeons (AAPS), oppose the restrictive recommendations as do almost 41,000 signers of the LDA’s website petition against the Guidelines. Legislation protecting physicians who fail to comply with the IDSA guidelines from medical board sanctions has passed in three states, Connecticut, California and Rhode Island. 

"This dialogue would not have happened without the strong vision and leadership of the CT Attorney General Richard Blumenthal, who investigated this controversy, uncovered the facts, and called for this review, "said Diane Blanchard, Co-President of Time for Lyme. "We hope it sets the stage for further dialogue," 

The panel is expected to make a determination by the end of the calendar year. 

Time for Lyme, the national Lyme Disease Association, and California Lyme Disease Association are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection.