PRESS RELEASE
April 23, 2010- A Review Panel for the Infectious Diseases Society of America (IDSA) Lyme Disease Guidelines announced this week, after more than a year of reviewing hundreds of pages of documents, that it was recommending many changes be made to the society's next revision of their controversial guidelines.
The review was to determine whether the guidelines should stay in place, be partially revised or fully rewritten. Over 25 suggestions for revisions were made by the eight member Panel.
The IDSA’s restrictive guidelines, developed in 2006, stated that most cases of Lyme disease can be cured with a short course of antibiotics and had recommended, as insurers do, against expensive long-term antibiotic treatment. With increasing numbers of Lyme patients each year becoming chronically ill and disabled from persistent and worsening symptoms, changes to the status-quo were desperately needed.
Health care professionals and support groups have complained for years that the guidelines were responsible for patients not being properly diagnosed and treated. They also raised questions about the IDSA’s biased process for developing their guidelines and their multiple conflicts-of-interests. The Attorney General of CT agreed with the growing number of patients who had suffered as a result of chronic Lyme. After a lengthy investigation into the private medical society he stated,
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
Although the Review Panel voted unanimously to change or alter many of the previous recommendations in the guidelines during the next update (2011), there are still many unanswered questions and points of contention to be worked out.
For example, the IDSA guideline authors rejected findings from studies completed outside of the USA, allowing the perpetuation of a monopoly-like hold on the science and in the process, deeming much credible research by others unacceptable. The Review Panel, stacked with strong supporters of the IDSA (including its past president), did not positively address the unrealistic practice of dismissing science (national/international) that wasn’t necessarily in agreement with their own.
The Review Panel also rejected evidence (case studies and case series) that cited the successful use of long-term antibiotics for treating other infections and voted to uphold the IDSA’s theory that antibiotic use and the IV delivery method could be risky or harmful to Lyme patients.
One Panel recommendation increased the length of treatment for a coinfection (Babesiosis) due to the high rate of relapses, called for more testing to be done and suggested treatment continue for two weeks after all evidence of the tick borne infection had cleared.
A well-known sore spot for the IDSA has been their recommended Lyme testing methods and the requirement that patients have two positive tests before being treated. Lyme tests cost Maryland patients over $3 million dollars each year, a waste considering a 2005 John Hopkins study found that 75% of patients were being missed using the IDSA recommended tests. The Panel suggested the next guidelines include information about the problems associated with Lyme disease testing.
National groups and their affiliates expressed disappointment with the Review Panel decision on many points. The organizations voiced concerns early on over the bias in the Panel selection and the lack of treating physicians. We all feel patients need adequate treatment and relief now and we are urging the CT Attorney General to examine the process and take further action if it is warranted.
For more information please contact Lucy Barnes- AfterTheBite@gmail.com