IDSA declares war on ILADS

By on Apr 10, 2008 in Politics & Activisim

The IDSA (Infectious Disease Society of America) does not recognize the existance of chronic Lyme disease and is hostile to its sufferers. ILADS (International Lyme and Associated Diseases Society) is the main advocacy group established to oppose the IDSA and help those suffering from chronic Lyme. In its latest move, the IDSA has declared war on ILADS. To read more about this battling, see an excerpt from the 2008 Lyme Disease Annual Report. You can help! Read this press release…

Press release from CALDA (California Lyme Disease Association):

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. 

 

 


I’m also going to include this from a Lyme activist:

Dear Friends,

Right now, federal Lyme legislation is stalled in Congressional committee. H.R. 741 would provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.   If it’s not released for a vote and we don’t get the hearing on the bill, soon, the Lyme bill will die and 10 years worth of work will die with it.  So, we need to contact the CA members of this group to urge them to get the bill to the next level which is a hearing.

If you live in California, please call the following six members of the House subcommittee dealing with this bill.

Cong. Henry Waxman 202 225-3976
Cong. George Radanovich 202.225-4540
Cong. Mary Bono Mack 202 225-5330
Cong. Lois Capps 202 225-3601
Cong. Anna Eshoo 202 225-8104
Cong. Hilda Solis 202 225-5464

(These are numbers of their DC offices. Please call during DC business hours.)

Sample phone call script:

My name is _________ and I am a resident of California. I (or my friend/family member)have suffered terribly from Lyme disease for more than __3__ years. Thousands of other Californians are afflicted with this disease as well, and not enough is being done to help them/us. I know that Congressman/woman ____ is on the subcommittee dealing with HR 741, the Lyme and tick-borne disease bill. I want him/her to ask committee chairman Frank Pallone to schedule a hearing on HR 741. Thank you.

Please remember to thank Rep Eshoo, who is a co-sponsor of this bill.

In Summary:

What to say: Urge your federal reps to contact the Chairman of their respective committee and request a hearing for the Lyme disease bill.

If it is a Senator on your list: tell him/her to contact Senator Edward Kennedy (MA) who is the Chairman of the Senate Health, Education, Labor & Pension Committee [HELP]

If it is a Congressman: tell him/her to contact Congressman Frank Pallone (NJ) who is the Chairman of the Health Subcommittee, Energy & Commerce

How to make contact: By phone, fax and/or email

Why: The congressmen and senators in your state sit on the two Washington health committees where the Lyme disease bills are sitting, and if the committee chairs do not release the Lyme bills for a vote, the bills will die.

….

Thanks to everyone who is helping!!!