ILADS professionals to speak at the IDSA hearing

We want to keep you informed about everything ILADS is doing to spotlight the historic Infectious Disease Society of American (IDSA) hearings this week, Thursday, July 30th. The hearings are in response to a lawsuit against the IDSA, brought by Connecticut's Attorney General Richard Blumenthal. In his groundbreaking lawsuit, AG Blumenthal charged that the IDSA guidelines for Lyme disease prevent many seriously ill patients from getting necessary treatment. A 2008 settlement resulted in the IDSA agreeing to create a new panel to review its guidelines. The following professionals representing ILADS are testifying at the hearings—to be held at the Ronald Reagan Building in Washington, DC: Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California; Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA; Allison Delong, ILADS, Providence, RI; Ken Liegner, MD, ILADS, Armonk, NY; Steven Phillips, MD, ILADS, Wilton, CT; and Raphael Stricker, MD, ILADS, San Francisco, CA. See the IDSA website for a complete list of the presenters.

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Contact:

Marc Silverstein

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Case in Point: Broken Healthcare System

 HISTORIC HEARINGS ON

MOST CONTROVERSIAL DISEASE IN U.S.

LYME DISEASE: SPOTLIGHT ON A HIDDEN EPIDEMIC

Lyme Patients Gather in D.C. and Around the World to Push for Better Treatment and Recognition of Chronic Disease

Story Summary:

·       What happens if tick-borne illness is missed, or left untreated? Millions of patients say they suffer from chronic (or long-term) Lyme disease. But gatekeepers in medical community refuse to recognize illness.

·       Connecticut Attorney General sued gatekeepers (Infectious Diseases Society of America, or IDSA), forcing the oversight panel to review its controversial treatment guidelines that bar patients from getting chronic Lyme disease diagnosis and necessary treatment.

·       Hearing to review long-suppressed scientific evidence that Lyme disease can become persistent and debilitating.

·       Lyme disease patients from around the world will watch the DC-based hearing via webcast and participate in an international Twitter chat to share reactions.

(Washington D.C.) – It’s a pivotal moment in the heated medical debate surrounding Lyme disease.  Controversial treatment guidelines which chronic Lyme patients say keep them from being properly diagnosed and treated will be reviewed in a landmark hearing held Thursday, July 30 in Washington D.C.   Lyme disease is the fastest growing infectious disease in the United States today, affecting up to 300,000 Americans each year.  Many think the tick-borne illness is easily cured, but what happens when it’s missed initially or improperly treated? Patients and many of their doctors argue Lyme becomes chronic—or long term.

“The medical establishment will be forced to consider the strong scientific evidence that Lyme disease can become a persistent, long- term infection that may require more aggressive treatment than what is allowed under the current treatment guidelines,” says Dr. Daniel Cameron, President of the International Lyme & Associated Diseases Society (ILADS). Cameron will be among several doctors, scientists, and patients testifying at Thursday’s hearing.

The Infectious Diseases Society of American (IDSA) is holding this hearing in response to an antitrust investigation by Connecticut Attorney General Richard Blumenthal. In his groundbreaking lawsuit, AG Blumenthal charged that IDSA’s guidelines for Lyme disease prevent many seriously ill patients from getting necessary treatment. A 2008 settlement resulted in IDSA’s agreeing to create a new panel to review its guidelines.

Doctors treating Lyme disease aggressively with long-term antibiotics are targeted by medical boards and insurance companies and may lose their licenses.   The Connecticut Governor recently signed into law legislation that would permit physicians to determine what treatment is best, in effect overruling the current IDSA guidelines.

“These current guidelines have had a devastating impact on patients,” says Dr. Joseph Jemsek, Infectious Disease Specialist in South Carolina—and a member of both IDSA and ILADS.  “In the midst of the healthcare reform crisis, these hearings offer a microcosm of a broken healthcare system.”

The media is invited to a Lyme Watch Media Center, where they can interview patients, advocates, and doctors in response to the webcast hearings. The Center is in the Congressional Room on the lobby level at the J.W. Marriott Hotel, 1331 Pennsylvania Ave. NW, from 8am to 5pm.