WASHINGTON, DC—On Thursday, May 22, 2014, Lyme disease victims from around the U.S. will unite at the Infectious Diseases Society of America (IDSA) headquarters for the 2014 Mayday Project protest. They will demand IDSA update its controversial guidelines for Lyme disease to reflect the current state of science and that IDSA acknowledge the evidence for a chronic form of Lyme disease that is resistant to antibiotic treatment.
Mayday coordinator Josh Cutler has been fighting late stage neurological Lyme disease for eight years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions. Cutler was rushed to the emergency room on a dozen occasions and at one point was confined to a wheelchair. According to the IDSA, Cutler cannot possibly still have Lyme because he was treated according to their guideline’s recommendations.
Cutler says, “IDSA’s guidelines for Lyme disease contribute to misdiagnosis and denial of treatment for thousands of people like me. We are uniting to demand that IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme. IDSA needs to put our health first.”
Cutler is just one of many thousands of patients in similar or worse situations. A study by LymeDisease.org published in the March 2014 issue of PeerJ, an open-access medical journal, found that Lyme patients reported a poorer quality of life than patients with other chronic diseases, including congestive heart failure, diabetes, multiple sclerosis, and arthritis. Fair or poor health was reported by 73% of patients with chronic Lyme disease compared to 16% of the general population.
Lorraine Johnson, an attorney/advocate for issues related to the medico-legal and ethical aspects of Lyme disease, has studied the financial impact of Lyme extensively. “I don’t have to tell patients that they are suffering,” says Johnson. “The fact is that they are forced to see too many physicians before they are finally diagnosed. By the time they get diagnosed, they are profoundly ill and their illness is much more difficult to treat. Eighty-four percent are not diagnosed within 4 months; 65% of those with chronic Lyme have had to cut back on or quit work or school. Moreover, 25% have been on disability and over 75% of these have been on disability for more than a year. Beyond the personal suffering, the financial burden this imposes on individuals, their families, and, ultimately, society is enormous. One thing that is certain is that ignoring this problem is costly and grows more costly every day that we fail to intervene.”
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 disagree about virtually everything, including testing, diagnosis, treatment, and the very definition of Lyme disease.
IDSA believes 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 antibiotic treatment is not warranted.
ILADS believes Lyme disease is a serious national medical problem of epidemic proportion that needs to be treated aggressively and often requires long-term treatment beyond the limits set by IDSA. ILADS guidelines recognize a chronic form of Lyme disease and recommend that the “duration of therapy be guided by clinical response, rather than by an arbitrary treatment course.”
A growing number of physicians, legislators, and legal experts are speaking out against the IDSA guidelines for Lyme.
According to Johnson, who serves as the CEO of LymeDisease.org, “Doctors rely on guidelines to determine how best to treat their patients, and insurance companies use them to decide what treatments to pay for. The IDSA guidelines for Lyme define the illness so narrowly that many people otherwise determined to have Lyme disease are denied access to medical care. Frequently, those given treatment are limited to a “standard course” of antibiotics (often 2–3 weeks) even when they remain ill. Furthermore, insurance companies often won’t pay for anything beyond what’s stipulated in the guidelines.”
In 2009, the Association of American Physicians and Surgeons wrote an open letter to the IDSA sharply criticizing its guidelines for Lyme. Below are excerpts.
AAPS objects to the overly rigid IDSA Lyme Guidelines that were published in 2006. . . . These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do. The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable. Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases, long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions.
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 the development of their guidelines, 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.”
Blumenthal’s findings include the following:
* IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel.
* IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee.
* IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus.”
* IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded.
* IDSA violated its own conflicts of interest policy.
IDSA reached a consent agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 guidelines and update or revise them. In 2009, the guidelines were reviewed and updated, but no significant changes were made, and Blumenthal charged the IDSA with violating the agreement.
According to Blumenthal, the IDSA used an “improper voting procedure, based on a process of its own design, which blatantly violates the Settlement Agreement and undermines the integrity of the voting process.”
In addition to inflexibility regarding its guidelines, IDSA has consistently opposed patient-centered legislation at the State and Federal levels. At their 2004 annual meeting, the IDSA passed a resolution to oppose patient legislative initiatives. At IDSA’s 2006 annual meeting, “Defeat Patient Sponsored Legislation” was a top agenda item.
Mayday supporter Bruce Fries is concerned about the impact of the Lyme wars on patients like him. “This is more than a power struggle and academic dispute,” he says. “People are suffering because a small group of influential physicians and researchers are too stubborn and self-important to do what’s best for patients. The medical community needs to fix its badly broken system of dealing with emerging chronic illnesses like Lyme.”
Fries contracted Lyme disease, along with several co-infections, in late 2007. He visited nine doctors before he was finally diagnosed and treated. “My doctor has helped hundreds of patients get better,” says Fries. “He follows the ILADS guidelines and treats people individually. If a treatment doesn’t work, he tries another approach or combination therapy. Unfortunately, when treatment goes beyond the IDSA guidelines, doctors like him risk becoming the focus of medical board investigations. Good doctors who help patients regain their health are targeted, while doctors who follow the IDSA guidelines and deny treatment to patients who are later proven to have Lyme face little or no repercussions.”
Call to Action
The Mayday Project provides Lyme victims with a forum to publicly speak out and demand changes. Mayday coordinator Cutler calls on Lyme victims and others touched by Lyme to stand together and make a difference.
“We expect hundreds to attend. They 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 2014 Mayday Project protest will take place on the public sidewalks surrounding IDSA headquarters at 1300 Wilson Boulevard, Arlington, Virginia, which is across the street from the Hyatt Arlington and one block from the Rosslyn Metro station.
The protest will begin 7:00 a.m. Thursday, May 22, and continue through 5:00 p.m. Friday, May 23.
A welcome reception and coordination meeting will be held Wednesday, May 21, from 7:00 to 10:00 p.m. at the Holiday Inn at Rosslyn Key Bridge.
A press conference is scheduled for May 22 at 11:00 a.m. to give the media an opportunity to hear firsthand from patients, activists, and experts about the devastating impact of the disease, and the impact of the IDSA guidelines on patient health.
Mayday Project coordinators are working closely with the Arlington County Police to ensure that protesters comply with local laws and that the Department assigns an appropriate number of officers to the event.
Groups of activists will alternate shifts so the protest will have plenty of coverage throughout the day without wearing people out. Mayday’s own protest “marshals” will be stationed throughout the area to provide guidance and facilitate communication.
For event details and questions visit www.facebook.com/events/1421817074719323/