Lyme Advocates Call on IDSA to Focus on Patient Care Instead of Attacking Those in Distress

For the second day, Lyme patients and supporters from around the U.S. gathered in Arlington, VA, at the Infectious Diseases Society of America (IDSA) headquarters, to call attention to the epidemic of chronic Lyme disease and to ask the question: Why does IDSA continue to fight with and vilify patients instead of producing guidelines that would enable those who are chronically ill to receive medically necessary treatment.

The most recent incident came from IDSA spokesman and Johns Hopkins physician Paul G. Auwaerter, MD, who says patients with chronic Lyme symptoms dabble in conspiracy theories. “When you don’t understand something,” Dr. Auwaerter said in an interview with the Allentown Morning Call, “you try to insert a framework that makes sense to you.” Auwaerter and other IDSA researchers claim that there is no evidence for the existence of chronic Lyme.

Kenneth Liegner, MD, who specializes in internal medicine, critical care, Lyme disease and related illnesses, suggests that IDSA has neglected to consider a large body of peer-reviewed evidence that chronic Lyme exists. Liegner practices in Pawling, NY, near the epicenter of the Lyme epidemic. In a September 2010 letter to the Institute of Medicine, Liegner said:

“Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease…The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.”
 
In 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator (D-CT), launched an investigation of IDSA, based on allegations of abuses of monopoly power and exclusionary conduct, in violation of antitrust law. In a 2008 press release, Blumenthal noted, “The IDSA’s guidelines panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”
 
And while IDSA plans to update its treatment guidelines and promises to follow the Institute of Medicine’s (IOM) standards for trustworthy guidelines—which call for the participation of members of the key affected group—IDSA has yet to place any Lyme patients on its guidelines panel.

“Another serious concern,” Cuter adds, “is that IDSA has consistently opposed badly needed patient-centered legislation at the state and federal levels.”

At its 2004 annual meeting, IDSA members passed a resolution to “oppose patient legislative initiatives,” and a top agenda at its 2006 annual meeting was “defeat patient-sponsored legislation.”

“This turns the concept of patient-centered health care upside down,” says Cutler. “IDSA physicians should be working with and for patients rather than against them.”

Lyme patients and advocates from as far away as Montana, Tennessee and California attended the two-day rally in front of the IDSA headquarters, which included a candlelight vigil to honor those who have lost their lives while battling chronic Lyme disease.

Patients who were too sick to attend the rally shipped shoes to IDSA to call attention to the “hidden” epidemic of chronic Lyme disease. Cutler says, “Most Lyme patients are not well enough to travel to Northern Virginia. We wanted to help them send a message too.”

About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.

For more information, visit http://www.themaydayproject.org.

References

Review of evidence for immune evasion and persistent infection in Lyme disease
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/

Severity of chronic Lyme disease compared to other chronic conditions: A quality of life survey
https://peerj.com/articles/322/

Under Our Skin, an award-winning documentary about Lyme disease
http://www.underourskin.com
 

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