August 18, 2005 The Honorable Joe Barton Chairman Committee on Energy and Commerce 2125 Rayburn House Office Building House of Representatives Washington, D.C. Washington, D.C. 20515
Dear Chairman Barton:
I write on behalf of the Infectious DiseasesSociety of America (IDSA), a national medical society representing more than 8,000 board- certified infectious diseases physicians and scientists, to communicate the Society's position concerning two Lyme and tick-borne diseases bills recently introduced in the House.
The bills of concern include H.R. 2877, the "Act for Lyme Education and Research and Tick-Borne Diseases" and H.R. 2526, the "Tick Borne Diseases Advisory Committee Act." We understand that a number of Lyme disease advocacy groups are supporting these bills. IDSA and the infectious diseases specialists that we represent understand and are sympathetic to the plight of individuals who seek treatment for Lyme and other tick-borne diseases. As such, we support the need for additional funding for Lyme and tick-borne diseases research as proposed in the bills. We also support H.R. 2877's requirement that the Institute of Medicine (IOM) of the National Academies conduct a review of Lyme disease. Specifically, we believe that the IOM should study diagnostic standards, the adequacy of current treatment guidelines, treatment optionsfor post-Lyme disease disorder, effectiveness of current prevention methods, and the controversies associated with chronic Lyme disease.
However, IDSA does not support the idea of establishing a tick-borne diseases advisory committee, unless the IOM, upon conclusion of its study, recommends that such a committee is necessary. In this way, an impartial group can assess the need for and composition of such a committee. If the IOM deems a committee desirable, the IOM should set clear, specific mandates and objectives for the committee as well as make recommendations for the committee's composition to ensure impartial and scientifically sound deliberations.
If House leaders decide that the composition of the advisory committee is to be formed through legislation, as contemplated by the two House bills, established organizations representing scientific and practitioner groups working on tick-borne diseases should be named, such as IDSA, the American College of Rheumatology, the American College of Physicians, and the American Academy of Pediatrics. In this way, the advisory committee would be comprised of established experts in the field of Lyme and tick-borne diseases and its recommendations would promote sound medical practice and not the desires of special interest groups.
One special interest group of concern is the International Lyme and Associated Diseases Society (ILADS), which represents a few physicians who advocate unconventional treatments based on testimonials rather than scientifically sound clinical trials. ILADS treatment guidelines support the prolonged use of antibiotics for the treatment of Lyme disease. These guidelines do not represent the views of most infectious diseases specialists and other physicians who treat patients for tick-borne diseases and often contradict IDSA's Practice Guidelines for the Treatment of Lyme Disease (available at www.idsociety.org). Controlled clinical trials have shown no benefit from prolonged antibiotic therapy for the treatment of Lyme disease, and, thus, this practice is not compatible with the federal government's move toward an evidence-based model for the practice of medicine. In addition, prolonged antibiotic therapy may cause unnecessary patient discomfort, inconvenience and expense, but most alarmingly, it may be harmful, resulting in adverse drug reactions. Besides these problems for individual patients, the public health consequence of prolonged antibiotic courses may be to promote the emergence of antibiotic resistance in the community--an issue of concern to both congressional policymakers and infectious diseases physicians.
IDSA, its leaders, and staff would be happy to work with the sponsors of both bills as well as other House leaders to produce and pass strong Lyme and tick-borne diseases legislation this year. In particular, we would like to discuss in more detail the scope of a possible IOM study and the composition of any advisory committee being considered. We also would be pleased to talk with you or your staff further about the appropriate treatment of Lyme and other tick- borne diseases as well as any other aspect of the legislation whenever it may be convenient to do so. Please feel free to contact IDSA staff at 703-299-0200.
I may have missed this recently, but do you know what the current status of these bills is -- are they still in committee or what? -- any dates scheduled yet for votes? -- if we have not done so, who should we send letters to?
The way to find out the text and status of a bill in Congress is to go to the website below and type in the bill numbers or a search word. The bill numbers are HR 3427 and S. 1479. http://thomas.loc.gov/
It is my understanding that after Congress comes back into session, we will be getting instructions on what to do to show support. Am assuming this means contacting your representatives in Congress, asking them to suppport bill, sign on as a co-sponsor.
Probably will want us to encourage others we know to do the same. Maybe write a letter to the editor of the local newspaper, giving info about it.
[This message has been edited by lou (edited 28 August 2005).]
i wonder who put this fool up to authoring this letter; if he is self-appointed in writing this, then he is even more of a fool than i thought, because assertion(s) he posits directly contradict abundant,peer-review, evidence-based facts.
The guy that signed it probably didn't write it. I am guessing that Wormser (Dr. Worm) wrote it.
The amazing thing is that IDSA is telling its members to contact Congress asking for MORE funding for infectious diseases!!! Here is what their website says:
"Urge Congress to Support Increased Funding for Infectious Disease Activities in Fiscal Year 2006
Congress recently developed appropriation bills to fund federal health programs for fiscal year (FY) 2006, which includes funding for infectious disease (ID) programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), Food and Drug Administration and the Health Resources and Services Administration (HRSA), among other federal health agencies.
Modest increases or in some cases substantial decreases for infectious disease programs are proposed. If enacted by Congress, national and global infectious disease research, prevention, and treatment programs will be funded at levels that would prohibit agencies from fully implementing them and thwart federal efforts to address public health threats such as drug resistance, HIV/AIDS, and influenza, among other ID-related activities.
Congress will return in September to finalize spending levels for all federal programs. IDSA and HIVMA have already begun efforts to improve the FY2006 ID budget. Earlier this year, IDSA, and HIVMA sent testimony to congressional leaders emphasizing the need for increased funding for specific ID programs.
It is critically important that legislators hear from their constituents about how federal ID activities support public health at the local (voter) level. We encourage you to call and e-mail your elected congressional representatives using the talking points below to urge them to support increased FY 2006 funding for infectious diseases programs. An e-mail takes less than 3 minutes.
Please send a message today."
[This message has been edited by lou (edited 30 August 2005).]
I advise sending an email to walter stamms, he works at the university of washington, I sent him an email when he wrote that piece of garbage for the pennsylavania bill, and pointed out to him that the klempner study was horribly flawed, that there were no double-blind studies which have been conducted in the US or anywhere else which support the use of oral doxycyxline in the treatment of Bb S.S. neuroborelliosis, that steere who participated in the klempner study has since published that oral doxy may not be or is not effective in treating neuroborelliosis, and that the klempner study contained a "ghost citation" at the end which left the reader thinking that the IDSA 2000 guidlines support the use of oral doxy in treating neuroborreliosis, but there is nothing in these guidelines which supports this contention. Stamm didn't respond, I doubt he read the whole email.
It was scientific fraud, plain and simple. This is the worst scandal in US medical history, far surpassing tuskeegee, and IDSA and eis are desperately trying to keep the issue under their control, because when the dam breaks, and our lawmakers and law inforcement finally examine this issue closely, they will realize the fraud and inconsistency and some very powerful people and corporations (aka glaxo, paxil maker) are in very deep, including fauci at NIH and Dennis at CDC who are mengeles. NIH and CDC will be broken, and EIS disassembled.
If you understand the scientific issues involved, these stamm letters can be critiqued in a devastating fashion, and can be turned against him. It's an opportunity to point out to lawmakers exactly how these IDSA/EIS people lie. So if you have a good handle on the issues, please send letters to your reps and especially individuals who are the target of IDSA lobbying efforts.
This is the letter I sent to the Chairman of the Committee after I read Mr. Stamm's letter.
September 1, 2005 The Honorable Joe Barton Chairman Committee on Energy and Commerce 2125 Rayburn House Office Building House of Representatives Washington, D.C. Washington, D.C. 20515 Dear Chairman Barton: I write on my own behalf but in reply to a letter dated August 18, 2005 sent to you by Walter E. Stamm, MD President of the Infectious Disease Society of America on the subject of pending bills H.R. 2877 and H.R. 2526, both concerning Lyme and tick-borne diseases.
First I would like to note the hypocrisy inherent in the last line of Mr. Stamm's 4th paragraph ``In this way, the advisory committee would be comprised of established experts....and not the desires of special interest groups.'' How disingenuous of Mr. Stamm to distance HIS special interest group which lobbies Congress from other special interest groups. Why should the positions of his SIG deserve more attention and credibility than that of other SIGs interested in these 2 pieces of legislation? Because 8,000 board-certified infectious disease physicians and scientists speak with unanimity on this subject? I dare say I don't believe so. Because his SIG's position is the best? Other SIGs disagree. Why should the position of his SIG be given more weight than the position of ILADS and the thousands of victims of this ugly disease. What hubris.
Second, I wish to state that I am a victim of this nasty disease who was able to find sympathetic, knowledgeable, and experienced Lyme literate physicians after many months of unnecessary suffering and inadequate treatment by physicians who relied too closely on the positions of Mr. Stamm's organization. The Lyme literate physicians I found realized that the treatments for Lyme I had had were insufficient to restore me to good health. It seemed every time I had a two week or 4 week course of antibiotics, I would have a violent relapse of symptoms when the course of antibiotics ended. I have now finished my 8th month of continuous antibiotic treatment and am finally on the road to recovery.
Third, I take issue with the last line of Mr. Stamm's 5th paragraph stating ``the public health consequence of prolonged antibiotic courses may be to promote the emergence of antibiotic resistance to the community...''. This seems to be a questionable premise under which his organization would deny me the medicines I need to get well. Does his organization decry long term antibiotic treatment for teenagers with acne? Does his organization condemn the large scale feeding of antibiotics to animals in our food supply, probably ultimately contributing more to the result he fears than the prescription of long term antibiotics to people sick with Lyme? If his organization does, Bravo! I don't wish to dispute the over prescription of antibiotics in this country. It seems to be established. But denying antibiotics that people need to get better is a cruel result.
Fourth, I would like to volunteer my medical records of my plight of the past 4 years to the Committee to substantiate my belief that it was only continuous antibiotic treatment during the last 8 months which have allowed me to be able to even sit at this desk to compose this letter. They will show that starting with a bull's eye rash in the summer of 2001, and just intermittent antibiotic treatment from then until the summer of 2004, it was only after 8 months of continuous treatment beginning in January of 2005 that got me where I am today. I also volunteer to testify at my own expense before the Committee on the particularities of my individual experience with this disease. It's been a very unnecessarily frustrating experience due to the lack of knowledge about this disease on the part of most of the physicians I saw mostly because of the positions taken my Mr. Stamm's organization.