Lyme Disease Patients to Stage Multiday Protest at IDSA Headquarters
Patients are suffering and angry about the handling of the Lyme epidemic. They want access to treatment. They want better tests. They want insurance coverage that doesn’t end when treatment fails. They want doctors to stop telling them it’s all in their heads.
The Mayday Project Lyme patient advocacy group announced that it is moving forward with plans for a two-day protest at the headquarters of the Infectious Diseases Society of America (IDSA).
U.S. rates of Lyme disease have skyrocketed in recent years with the CDC announcing in 2013 that rather than 30,000 new cases annually there are likely 300,000.
The Mayday Project maintains that the IDSA’s guidelines for the diagnosis and treatment of Lyme disease harm patients who are routinely misdiagnosed and unable to obtain medically necessary treatment due to the restrictions imposed by the guidelines.
Mayday Project co-founder Josh Cutler has been fighting late-stage neurological Lyme disease for nine years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions.Cutler says, “We are uniting to demand that IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme.”
Controversy about Lyme disease has divided the medical community and led to the creation of the International Lyme and Associated Diseases Society (ILADS), which has published its own guidelines for Lyme. ILADS and IDSA guidelines differ in virtually every aspect, including the testing, diagnosis, and treatment of Lyme disease as well as the definition of Lyme disease.
IDSA states that Lyme is easy to diagnose and simple to treat with a limited course of antibiotics. According to the IDSA guidelines, chronic Lyme does not exist and long-term treatment is not warranted. ILADS argues that Lyme disease is a national health crisis of epidemic proportion that needs to be treated aggressively and often requires long-term treatment beyond the limits set by IDSA.
ILADS guidelines recognize chronic Lyme disease and recommend that the “duration of therapy be guided by clinical response, rather than by an arbitrary treatment course. ”Large numbers of Lyme patients remain seriously ill despite receiving the IDSA-recommended two- to four-week course of antibiotic treatment.
A 2013 study by John Aucott of Johns Hopkins University shows that over 30 percent of patients who are diagnosed and treated in the acute stage of Lyme disease continue to have ongoing illness. Debilitation can include being homebound, bedbound, or wheelchair dependent.
Kenneth Liegner, MD, who specializes in internal medicine, critical care, Lyme disease, and related illnesses, suggests that IDSA has neglected to consider the large body of scientific evidence that chronic Lyme exists and is widespread. Liegner practices in Pawling, New York, near the epicenter of the Lyme epidemic. In a September 2010 letter to the Institute of Medicine, he wrote:“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.”
On March 9, IDSA released a project plan to update their guidelines. The plan includes a thirty-day period for public comments. Patient advocates have expressed serious concerns there will be a repeat of the 2009 review of the guidelines, which ignored extensive scientific evidence for the existence of chronic Lyme disease.
According to the article Lyme Disease: the Next Decade: “The review panel held a public hearing that featured more than 300 peer-reviewed articles and 1600 pages of analysis supporting the concept of persistent infection despite short-course antibiotic therapy of 2 to 4 weeks in patients with persistent Lyme disease symptoms. Despite this extensive evidence, the IDSA review panel voted unanimously to uphold the flawed Lyme guidelines.”
On March 20, representatives from Mayday met with IDSA President, Dr. Stephen Calderwood, to discuss concerns about the plan for updating the guidelines.
During the meeting, Mayday requested that representatives from patient support groups and physicians in private practice who specialize in treating tick-borne illnesses be added to the review panel. Mayday also asked Calderwood to write a letter to Congress requesting more funding for research and expressed strong concerns about the inclusion of panelists with significant conflicts of interests.
The Lyme Disease Association report, Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines, documents the most serious conflicts of interests among members of IDSA’s review panels.
In November 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator, launched an investigation of IDSA, based on allegations of abuses of monopoly power and exclusionary conduct, in violation of antitrust law. In a May 2008 press release Blumenthal said, “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline 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.”
IDSA reached a consent agreement with Blumenthal’s office calling for the creation of a review panel to thoroughly scrutinize the 2006 guidelines. In 2009, the guidelines were reviewed, but no significant changes were made, despite the large body of peer-reviewed evidence for the existence of chronic Lyme disease that was presented to the panel. According to Blumenthal, the panel used an “improper voting procedure,” based on a process of its own design, which undermined the integrity of the voting process and violated the consent agreement.
Mayday held its first protest at IDSA headquarters in May 2014. IDSA released a statement that they were “listening,” but no action was taken regarding the guidelines, so Mayday held a follow-up candlelight vigil and protest at IDSA’s IDWeek medical conference in October 2014. During the conference, Mayday released an open letter to IDSA members calling on them to intervene on the behalf of patients to help rectify the guidelines in the interest of improving patient care.
Call to Action
Josh Cutler and co-founder Allison Caruana are calling on patients and others touched by Lyme to stand together and make a difference.
“We expect hundreds to attend,” says Caruana, whose five children contracted Lyme disease at birth. “Patients are suffering and angry about the handling of the Lyme epidemic. They want access to treatment. They want better tests. They want insurance coverage that doesn’t end when treatment fails. They want doctors to stop telling them it’s all in their heads. And most fundamentally, they want the IDSA to place the health of patients ahead of professional biases and self-interest.”
The event will take place on the public sidewalks surrounding IDSA headquarters at 1300 Wilson Boulevard, Arlington, VA, across the street from the Hyatt Arlington and one block from the Rosslyn Metro station.
The event begins with a Wednesday evening meet and greet and conference. The conference includes a presentation by the National Capital Lyme Disease Association on “The Necessity of Investigative Hearings,” and a presentation about the “The Science the Media Needs to Know.”
Rallies and demonstrations will be conducted Thursday and Friday. A group Lyme Disease Challenge is planned Thursday afternoon, with the goal of taking the largest bite out of Lyme disease yet. A candlelight vigil will be held Thursday evening to honor those who lost their lives while battling chronic Lyme disease.
Patients who are too sick to attend are encouraged to send a pair of shoes to IDSA to highlight the extent of the epidemic of chronic Lyme disease. Attendees are encouraged to bring footwear from Lyme patients to commemorate those who are unable to attend.
Wednesday, April 29
Advocate Conference from 4 p.m. to 9 p.m. at the Holiday Inn, Rosslyn, VA
Thursday, April 30
Rally from 7:00 a.m. to 3:00 p.m.
Candlelight vigil from 6:45 p.m. to 8:30 p.m.
Friday, May 1
Rally from 7:00 a.m. to 3:00 p.m.
For more details and to register, visit www.facebook.com/events/1524051617834268
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/.
The Infectious Diseases Society of America Lyme Guidelines: a Cautionary Tale About the Development of Clinical Practice Guidelines
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey
Review of evidence for immune evasion and persistent infection in Lyme disease
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