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Showing posts with label Lyme Advocacy. Show all posts
Showing posts with label Lyme Advocacy. Show all posts

Friday, September 4, 2009

Harts of Lyme: September Report


While many WA doctors are still supported in using the outdated "wait-and-see" approach to tick bites and possible infections, more and more families are affected by tick-borne disease. Learn about Lyme; knowledge is power. The estimated national yearly rate of infection is now roughly 480,000 cases. Close to half a million people!

The CDC reports 23 new cases of Lyme in WA last year -- I can tell you we have been contacted by many more people yet to be properly diagnosed, or who have had their diagnosis rejected by the health department, insurance companies, and indeed most doctors who are behind in the facts.

Kris Newby, an award-winning screenwriter and science writer, blogs:



Lyme cases spike 77% from 2006 to 2008

Blog: Under Our Skin, published by Open Eye Pictures.
Written by: Kris Newby

August 23, 2009
http://underourskin.com/blog/?p=337

Lyme disease continued its steep rise in 2008, as the CDC posted a final
tally of 35,198 reported cases, a 28% increase over the previous year.
Looking at a two-year timeframe, cases increased by 77% from 2006 to
2008. According to CDC epidemiologists, these reported cases are
underestimated 6- to 12-fold, due to inherent flaws in its passive
reporting system. So, the actual number of new Lyme cases in 2008 may
total upwards of 420,000. And many Lyme-literate physicians believe that
the real numbers may be even higher.

In 2008 the CDC changed its Lyme reporting process to include both
"confirmed" and "probable" cases in the total, and during this
transition year, it's difficult to tell how this affected the accuracy
of the case count. Fifteen states failed to report any "probable" cases.

Read the complete blog entry and join the conversation:
http://underourskin.com/blog/?p=337

Related Link
Final tally of CDC Lyme Disease numbers for 2008:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5831a5.htm




Please contact your Representatives in Congress to ask them to support the Lyme Bills (HR 1179 & S 1352)...any information needed about the bills can be found at http://www.cwork.com/ This would mean a lot to the Lyme Community, made up of many of our neighbours.

For online support in our state, please see:
http://health.groups.yahoo.com/group/WALDUC-Support/

Saturday, July 25, 2009

Historic Hearings



Case in Point: Broken Healthcare System
HISTORIC HEARINGS ON
MOST CONTROVERSIAL DISEASE IN U.S.
LYME DISEASE: SPOTLIGHT ON 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 a tick borne illness is missed, or left untreated? Millions of patients say they suffer from chronic (or long term) Lyme disease. But gatekeepers in the medical community refuse to recognize illness.
Connecticut Attorney General sued gatekeepers (Infectious Disease Society of America, or IDSA), forcing the oversight panel to review its controversial treatment guidelines that bar patients from getting a chronic Lyme disease diagnosis and 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 & 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 that chronic Lyme patients say keep them from being diagnosed and properly treated will be reviewed in a landmark hearing 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 argue that Lyme disease becomes chronic—or long term.

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

The Infectious Diseases Society of American (IDSA) holds this hearing in response to an antitrust investigation 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.
Doctors treating Lyme disease aggressively with long term antibiotics are targeted by medical boards and insurance companies and face losing their license. The Connecticut Governor recently signed into law legislation that would permit physicians to determine what treatment is best and, 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.

MEDIA INQUIRIES: ILADS President Dr. Daniel Cameron and Lyme disease patients are available for interviews. For more information contact: Marc Silverstein at (202) 716-9123 or at marc@onthemarcmedia .com