Lyme Advocates Take Fight for Reform to Capitol Hill

Washington, DC – March  2016 – Because of CDC policy failures, mismanagement, and violations of Federal law, hundreds of thousands of Lyme patients experience a greatly diminished quality of life—a tragedy compounded by financial hardships from out-of-pocket costs and lost income. The burden on individuals as well as on our economy is enormous, the suffering is widespread, and much of this is preventable.

Lyme patients and advocates from across the U.S. will gather for a “We the People” rally at the U.S. Capitol on May 19. The next day, simultaneous solidarity rallies will be held at the Infectious Diseases Society of America (IDSA) headquarters in Arlington, VA, and at the Centers for Disease Control and Prevention (CDC) headquarters in Atlanta, GA.

The events are organized by the Mayday Project Lyme patient advocacy group in collaboration with advocates and advocacy groups throughout the U.S. They are calling for Congressional oversight of CDC’s Division of Vector-Borne Diseases, which is responsible for policy on Lyme disease. They want an end to CDC-IDSA conflicts of interest and they want treatment guidelines based on science rather than the vested interests of IDSA members.

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Mayday Project co-founder Allison Caruana says, “Because of CDC policy failures, mismanagement and violations of Federal law, hundreds of thousands of Lyme patients experience a greatly diminished quality of life—a tragedy compounded by financial hardships from out-of-pocket costs and lost income. The burden on individuals as well as on our economy is enormous, the suffering is widespread and much of this is preventable.”

She adds, “CDC provides preferential treatment to IDSA by promoting IDSA’s 2006 guidelines for Lyme disease while withholding information from the public about the more current and more comprehensive 2014 Lyme guidelines from the International Lyme and Associated Diseases Society (ILADS).”

Unlike the ILADS guidelines, the IDSA guidelines do not comply with the Standards for Developing Trustworthy Clinical Practice Guidelines published by the Institute of Medicine (IOM) nor do they comply with the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group standard for rating evidence and recommendations. Even though the 2006 IDSA guidelines have been delisted by the National Guideline Clearinghouse (a division of the U.S. Department of Health and Human Services), CDC continues to promote those guidelines on its website and in information provided to the public.

IDSA emphasizes that the guidelines are voluntary, but CDC’s endorsement is effectively an official seal of approval, so many physicians feel compelled to comply and insurance companies are supported in refusing to cover non-IDSA–compliant care.

Caruana says,

Just as the merchants of doubt within the tobacco industry created a debate where there was none and for 50 years denied the connection between tobacco use and lung cancer, the IDSA guidelines rely on opinion from IDSA guidelines panel members, insisting that there ‘is no credible evidence’ for the existence of chronic Lyme. Yet hundreds of peer-reviewed studies provide evidence that chronic Lyme is a serious and widespread problem. Good science produced by prestigious academic institutions is ignored by CDC officials and IDSA guidelines panelists.

According to Mayday Project member Bruce Fries, who received official correspondence from CDC confirming its preferential treatment of IDSA,

CDC has abdicated its duty to the American people by allowing a private organization with extensive conflicts of interest to determine Federal healthcare policy. What’s more troubling is that CDC officials who provide the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a glaring and long-standing conflict of interest.

Fries adds, “Past efforts at oversight have been unsuccessful.” He cites as an example the following directive issued by the Senate Appropriations Committee in a 2001 report:

The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts. This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach.

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Fries says,

CDC has disregarded the will of Congress, and has instead adopted the viewpoint of IDSA, a private organization, with an increasingly indefensible position on chronic Lyme, while ignoring viewpoints based on more current scientific evidence. Additionally, CDC has excluded the viewpoints of clinicians with experience treating Lyme patients, and ignored the concerns of advocacy groups who have met with officials in charge of CDC’s program for Lyme disease.

Advocates are also calling on CDC to recognize the true prevalence of Lyme disease in the South and other so-called “non-endemic” areas. CDC’s position that Lyme disease is not a problem in these areas has been refuted by a study published in the December 2015 issue of Clinical Microbiology and Infection, which provides culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.

Caruana says a major obstacle to providing relief to patients who suffer from Lyme disease is the failure of NIH to allocate sufficient funding for research. Lyme disease affects more than 300,000 people annually yet it received just $23 million in funding for FY15, while West Nile Virus, with 1,996 annual cases, received $48 million. This works out to $24,000 for each case of West Nile, versus $76 for each case of Lyme.

She adds,

Very little of the funding that Congress does appropriate for Lyme disease goes to research that could directly help patients, such as studies to develop improved diagnostics and treatment. For example, it has been 15 years since the last clinical trials investigated treatments for chronic Lyme. By adopting the strategy of denying the problem, CDC and NIH have effectively prevented researchers from receiving grants to investigate better treatments for lingering and debilitating Lyme symptoms.

“CDC and NIH have failed to protect the public from this devastating epidemic,“ says Fries. ”Unreliable tests, treatment regimens that fail more than 36 percent of the time, inadequate programs for prevention, and CDC’s endorsement of outdated treatment guidelines have created a perfect storm of unmet medical need and patient suffering.”

“The American people deserve better,” says Caruana. “CDC and NIH need to put the well-being of patients first and give this public health crisis the attention it deserves. In addition to providing increased funding for research, Congress needs to hold CDC accountable and compel reforms that address the underlying problems. The costs of ignoring these issues are continued unnecessary suffering and an escalating economic burden to our society.”

Schedule of Events

Thursday, May 19
9:00 am – 3:00 pm: We The People Rally
6:30 pm – 8:30 pm: Memorial and Vigil
Union Square, Pennsylvania Ave and First St., NW, Washington DC

Friday, May 20
9:00 am – 5:00 pm: Solidarity Rallies—IDSA
IDSA Headquarters, 1300 Wilson Blvd., Arlington, VA

9:00 am – 5:00 pm: Solidarity Rally—CDC
CDC Headquarters, 1600 Clifton Rd., Atlanta, GA

Saturday, May 21
9:00 am – 3:00 pm: Family Fun Day
National Zoo, 3001 Connecticut Ave NW, Washington DC

Event Details
We the People and Solidarity Rallies—DC/VA www.facebook.com/events/1667326413547290
Solidarity Rally—Atlanta, GA www.facebook.com/events/1679265858981016

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

For more information, visit: www.themaydayproject.org

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