Lyme Policy Wonk

Connecticut residents are urged to sign the petition to hold the IDSA legally accountable for violating the antitrust Settlement Agreement with the CT AG. Patients in the Lyme community are alarmed by the IDSA’s flagrant violation of the antitrust Settlement Agreement. Those in Connecticut are urged to sign the petition (link below in full story) electronically and to download a print version of the petition and take it door-to-door, at shopping centers, post offices and other public venues to gather signatures. We need to make our voices heard and we need to make them heard now. Paper petitions may be downloaded from the link below this blog post and should be mailed back no later than May 31st to Time for Lyme, 30 Myano Lane, Ste. 20, Stamford, CT 06902. If you are a Connecticut resident or you know anyone in Connecticut, please get this petition distributed and signed. The health and well-being of Lyme patients depends on it!

Labor HHS 2010 appropriations language directed the National Institutes of Health (NIH) to“sponsor a scientific conference on Lyme and tick-borne diseases” and mandated that the conference represent the broad spectrum of scientific views…and provide a forum for public participation and input from individuals with Lyme disease.” Rather than conducting this review themselves as an NIH State of the Science conference as anticipated, the NIH subcontracted the work out to the Institute of Medicine. Looked at in the most kindly light, perhaps they regarded the Lyme controversy as “too hot to handle” or “not in my backyard”. A less charitable viewpoint would characterize the shunt to the IOM as “forum shopping”—a way of selecting a process that is most likely to favor a desired outcome.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Helene Jorgensen, the author of “Sick and Tired: How America’s Health Care System Fails Its Patients”. Helene Jorgensen presented her own encounter with Lyme disease and addressed the flaws in the clinical treatment flaws to date. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Ann Lyons, Vice-President of Time for Lyme, who addressed the testing issues in Lyme disease as well as the disease definition issues related to Lyme disease. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Diane Blanchard, Co-President of Time for Lyme, who addressed the issue of scientific bias and the importance of separating fact from opinion. She also emphasized that it was important to listen to patients drawing the parallel to the discovery of Lyme by Polly Murphy, a mother in a local community. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Pat Smith, President of the national Lyme Disease Association, who addressed process issues with the IOM hearing and raised concerns regarding the lack of transparency of the process and the need for a greater opportunity for patients and other viewpoints to participate in the hearings. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

Please refer back to this site for new post on the hearings

Please refresh this to update comment. This is my live blog on the IOM Hearing.

I have summarized the public comments made at the IOM hearing today. I intend to post the statements made by those speaking to the panel that are provided to me. Those who spoke included Pat Smith of the national Lyme Disease Assn., Diane Blanchard and Ann Lyons of Time for Lyme, Gregg Skall of National Capital, Helene Jargensen, author of Sick and Tired, Candy Brassard of the EPA, Rick Smith, Bob Smith, and Julia Rice, a former nurse. Others listed to speak who did not attend were Arthur Weinstein, Phil Baker, and Lynn Shepler.

The Connecticut Attorney General is reviewing the IDSA report to determine whether the IDSA has complied with the terms of the antitrust Settlement Agreement. Attorney General Richard Blumenthal's initial review of IDSA voting procedures on the guideline recommendations found the IDSA violated the agreement by rigging the vote to favor no change in the guidelines. We have been informed that both Washington State Attorney General and the Attorney General in Pennsylvania have sent letters to the IDSA requesting that they comply with the Settlement Agreement voting procedures. In addition, US Legislator Chris Smith and US Senator Chris Dodd also wrote the IDSA expressing "deep concern" regarding the IDSA voting procedures. Faced with this scrutiny, the IDSA recast its vote on all recommendations to comply with the agreement–with a major exception. They refused to redo the vote on the one recommendation that required that diagnosis of Lyme could only be made if there is a positive blood test. This vote is critical because even under the initial flawed voting procedure the vote split 4 to 4 which means there was no consensus on the requirement that diagnosis be confirmed by positive lab tests. The Attorney General is currently reviewing the IDSA report to determine whether the IDSA has complied with the Settlement Agreement. The press release of the CT AG is set forth below. I encourage those concerned to contact the CT AG Office and let them know that you want the vote redone on the major issue of lab test confirmation for diagnosis. Details follow.