Please act on this.........and help all Lyme Disease sufferers..
.The California Lyme Disease Association, the national Lyme Disease
Association and Time for Lyme distributed the following press release
on April 9, 2008, regarding the IDSA's recent attempt to kill federal
legislation that would provide funding for Lyme research and give
patients a voice in research needs. To help get this bill passed in
the Senate and House, see instructions below the release.
Lyme Disease Physicians and Patients
Expose Research Group's Ploy to Silence Them
Already caught up in an anti-trust investigation, IDSA opposes
research bill in order to maintain monopoly over Lyme diagnosis and
treatment options
Washington, DC - Physicians specializing in treating chronic Lyme
disease and a national coalition of Lyme disease patients and their
families today accused a medical research group of trying to exercise
monopoly control over research on Lyme and tick-borne diseases.
"We're very disappointed," said Pat Smith, president of the national
Lyme Disease Association (LDA), responding to a letter to Congress by
the Infectious Diseases Society of America (IDSA) that seeks to deny
patients a voice regarding the research needed to better understand
the disease.
Lyme disease is a serious bacterial infection that develops from the
bite of an infected tick. The disease is often misdiagnosed or goes
untreated, causing many patients to suffer persistent health problems,
including neurological disorders, crippling muscle and joint pain,
disabling fatigue, psychological disorders, and even death. Even when
Lyme disease is caught early and treated with a short course of
antibiotics, the debilitating symptoms can persist and require
additional longer-term treatment.
In March, IDSA wrote Congress attacking the Lyme and Tick-Borne
Disease Prevention, Education and Research Act of 2007, introduced by
Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and
Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE)
in the Senate. The broadly supported bipartisan bill calls for
acceleration of Lyme disease research and creates a new federal
advisory committee made up of the full range of scientific viewpoints
on Lyme, including a seat for patient advocacy groups.
The IDSA is currently under investigation by the Connecticut Attorney
General for abuse of monopoly power and exclusionary conduct in
formulating its Lyme disease guidelines, which were developed by a
panel that held significant commercial interests in diagnostic tests,
vaccines, and consulting arrangements. In its letter to Congress
opposing the Lyme Bill, the IDSA failed to mention this ongoing
investigation.
IDSA researchers have virtually controlled Lyme disease research for
the past 30 years amidst ongoing controversy surrounding its
guidelines, which deny patients the right to treatment options and
undermine the ability of physicians to use their clinical discretion
in treating patients. IDSA provides private health insurance
companies with the basis for denying long-term treatment for chronic
Lyme disease.
The California Lyme Disease Association (CALDA), national Lyme Disease
Association (LDA) and Time for Lyme (TFL) are non-profit organizations
that were founded by individuals who had personal experience with Lyme
disease, in order to address the lack of research, education and
support services available for this newly emerging infection.
####################(end of press release######################
If the IDSA gets its way, this bill will die without ever having a
public hearing. If you don't want that to happen, here's what to do:
Right now, the bill is stalled in two Congressional subcommittees (one
in House, one in the Senate.) If the committee chairmen do not release
the measures for a vote, the Lyme bills will die. We would then have
to wait until next year to start the process all over again.
Click here for a list of states with members on the committees:
http://www.lymediseaseassociation.or...1.html#Actions
If your state is listed, click for contact information. Urge your
representatives to contact their committee chairmen and request a
hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator
on your list, have him/her contact Senator Edward Kennedy (MA),
chairman of the Senate Health, Education, Labor and Pension Committee.
If it is a member of the House, have him/her contact Congressman Frank
Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.
Phone your representatives in their DC offices during regular business
hours. It's quick and easy. The staff will tally all calls they receive.
If your state is not listed, see "other actions needed by individuals"
at the above link.
Actual bill text:
http://thomas.loc.gov/home/thomas.html
Click Bill # and type S 1708 or HR 741.