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.
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:
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.
posted
JB, thanks for showing the link, i was going to try to copy it here, but my new pc gets hung up and will show only a few lines vs. 2 page letter. HOW DISGUSTING THAT LETTER IS! HOG WASH! *********************************************
here's feedback from 2 of our members here who are on my lyme group list of activism folks..
Robin and Daise, Thank you both for your great suggestions! I'm forwarding them hopefully to all I sent earlier.
Robin, yes, I agree 100%; we need to be calling the COMMITTEE CHAIRMAN shown below that you talked PALLONE'S AID!
Tomorrow, I'll call there and give them my IOWA story, etc!
For those of you like me who do NOT have a cell phone and FREE UNLIMITED MINUTES, does a close friend or family member have one you can borrow for 10 minutes to call this VIP, person who can get our lyme bill out of COMMITTEE??
This way we can show CHAIR PALLONE'S OFFICE how MANY NUMBERS of lyme patients are effected, and hear OUR stories: losing jobs, health insurance, divorces, homes, bankruptcy, and fighting for DIGNITY of some type of quality of life!
To all receiving, please do whatever you can PHYSICALLY do! Thanks so much for helping ALL of us chronic lyme patients nationwide. Get your family/friends involved too! Betty G, Iowa lyme activist
robin wrote: 4.10.08 Hi Betty - when I saw Pallone's number listed here, I called it and spoke with the aide -
told him my story, SF's story, the bay area's, in general and why this is so important - like the very future of life in question.
He took down my name and address and thanked me for calling. I think we should call this office directly. - Robin
****************************************** Hi Betty, Those lousy, rotten IDSA ducks. Yes, I've sent my letters and am trying to arrange appointments lcoally to see who I can.
I am in the process of making it so simple for all the very ill newbies in my group that maybe some of them can then reply. I going to pre-address the emails! Thank you! daise ****************************
Since Cong. Pallone is our ultimate target , please contact everyone you know in New Jersey and ask them to call him at 202) 225-4671 ********************************************
and ask that he put HR741 on the calendar for a hearing.
from bettyg.....
i suggest we do the same thing for sen. ted kennedy; call his DC office since he's the chair of SENATE S 1408 bill!
could someone look up his no. and post it here? big thanks!! ************************************
i'm quite sick with my cold, and this is all i can do presently! bettyg THANKS!
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posted
Hi: THANK YOU BOBIDOR-- I called everyone on the list for New York State plus my congressman (John Hall) to ask for a hearing for HR741.
They were all very nice and receptive. Hillary's gal was nice (Hillary did step up with this legislation..despite what people may think about her...)
I'll call Kennedy's office on Monday.
The IDSA and cronies at big DC law firms are probably feting these congressmen with lobster dinners and all u can eat shrimp cocktail hours ---nonstop-- while we sit at home SICK, unemployed and hurting----but at least we can get our two cents in with a quick phone call.
Thanks for the motivation! Making these calls made feel less like a VICTIM!!! -snappy
Posts: 696 | From New York | Registered: Aug 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I just sent an email to the ISDA with my opinion of them. I am sorry I can't be more civil to night. After five years of treatment, I am in horrible pain from lyme and babesia.
The ISDA are all criminals. I don't see any difference between them and an every day street murderer.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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