Lisa Chamoff, Staff Writer
Published: 10:44 p.m., Thursday, April 22, 2010
Leaders of a local Lyme disease advocacy group are disappointed, but not surprised, that a special panel formed as part of investigation by Connecticut’s attorney general has decided treatment guidelines for the disease do not need to be changed.
The eight-member review panel issued its report Thursday, unanimously agreeing to uphold the disease treatment guidelines developed in 2006 by the Arlington, Va.-based Infectious Diseases Society of America. The guidelines, among other things, don’t recommend treating Lyme disease with antibiotics for more than a few weeks and say there is no evidence that chronic Lyme disease exists.
"I do not understand why they cannot be more open-minded to help all of the patients who are suffering," said Diane Blanchard, co-president of Time for Lyme, a Greenwich-based nonprofit group that advocates for better research into and treatment of the disease.
"These guidelines, I can understand why they would want to uphold them strictly from perhaps a legal responsibility position," said Blanchard, who noted she had not yet read the panel’s full report. "But this isn’t about legal responsibility. This is about the Hippocratic Oath, ‘First, do no harm.’ This is about taking care of the patients. For too long, patients have suffered and they are still suffering and nothing has changed. That is criminal."
The panel was the result of an antitrust investigation by Connecticut Attorney General Richard Blumenthal, which found the Infectious Diseases Society of America panel responsible for the 2006 guidelines had conflicts of interest, and didn’t consider other opinions and evidence.
Richard Whitley, president of the society, told reporters on a conference call Thursday that the committee substantiated that there were no conflicts of interest.
"I think the attorney general was misguided by the activists presenting their own opinions," he said. "We spent an immense amount of time trying to suit his needs and those of his supporters."
Blumenthal said in a statement that his office is reviewing panel’s report.
"We will carefully and comprehensively assess the final report and the review process leading to that report to determine whether the IDSA fulfilled the requirements of our settlement," he said.
The process included a July hearing in Washington, D.C., with testimony from medical professionals and scientists from across the country, including some who presented evidence supporting existence of chronic, symptomatic Lyme infection.
But advocates say they had issues with the makeup of the special panel from the onset, since it didn’t include professionals who treat people with Lyme disease. Blanchard said that an ombudsman who screened all applicants to the panel for conflicts of interest, such as a financial interest related to Lyme disease, was paid by the IDSA.
Earlier this year, Blumenthal wrote a letter to the society saying he was concerned that the review panel was not following proper procedure stipulated in the settlement agreement.
In his letter, Blumenthal said that the panel should have voted on whether each of the 2006 treatment recommendations were medically and scientifically justified in light of the evidence presented at the July hearing. Instead, based on pertaining to the panel’s voting, the group had only voted on whether each of the guidelines should be revised, rewritten or remain unchanged.
John Heyes, a spokesman for the IDSA, said Thursday those concerns were addressed by the panel.
However, advocates say they still have concerns about the process.
"Basically, they figured out how to game the system," said Dr. Robert Bransfield, a New Jersey psychiatrist and president of the International Lyme and Associated Diseases Society, who was scheduled to speak at Thursday night’s forum. "It was whitewashed. And patients will suffer."
The Associated Press contributed to this story. Staff Writer Lisa Chamoff can be reached at email@example.com or 203-625-4439.