Topic: ILADS & Doc S Respond to IDSA Corzine Letter
CaliforniaLyme
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Member # 7136
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Press Room By Raphael Stricker, MD President, ILADS
August 28, 2007
The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001
Dear Governor Corzine,
I am writing in response to the letter of August 7 from Dr. Henry Masur, President of the Infectious Diseases Society of America (IDSA). That letter urged you and other governors to turn your backs on patients with Lyme disease. I would like to offer a more positive approach from my organization, the International Lyme and Associated Diseases Society (ILADS).
First, however, I would like to extend ILADS' support in the battle against Lyme disease to your state of New Jersey, which as you know has one of the highest rates of Lyme disease in the country. Lyme disease affects as many as 250,000 people per year in the United States, based on under-reporting statistics from the Centers for Disease Control and Prevention (CDC) and data from state health departments. I hope that the former governor of New Jersey is doing well in her fight against this insidious tick-borne illness.
Dr. Masur states correctly that he represents a group of 8,000 doctors who specialize in infectious diseases. However, only a small fraction of that group knows anything about the diagnosis and treatment of tick-borne diseases, including Lyme disease. Unfortunately that small faction has hijacked the IDSA policy on Lyme disease and created treatment guidelines that are so restrictive that the Attorney General of Connecticut is currently investigating potential antitrust violations and restraint of trade arising from the exclusionary process that led to the IDSA guidelines formulation.
In contrast, ILADS is an international organization of healthcare providers who specialize in the treatment of Lyme disease and associated tick-borne disorders. The members of our multidisciplinary society care for some 50,000-100,000 patients with tick-borne diseases, and we have published evidence-based guidelines for the diagnosis and treatment of Lyme disease (available at www.ilads.org). Our guidelines are flexible and inclusive. They allow practitioners to treat patients in a more pragmatic fashion, especially if those patients are suffering from chronic Lyme disease.
A major problem is that Dr. Masur and IDSA refuse to acknowledge the existence of chronic Lyme disease, stating that there is "no convincing published data" to support the existence of this serious chronic illness. IDSA has repeated this mantra despite evidence from more than 19,000 peer-reviewed scientific articles that chronic Lyme disease does in fact exist. The problem is that IDSA does not accept this evidence and buries its head in the sand every time the evidence is brought up. In fact, IDSA refused to meet with ILADS to discuss our concerns before the IDSA guidelines were adopted. It is certainly hard to convince an organization that doesn't want to listen to the opposite argument.
Dr. Masur employs two lines of reasoning to discredit treatment with longer courses of antibiotics for patients with chronic Lyme disease: First he states that "carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy". This statement ignores the fact that there have been only two published studies that fit this description, and the results were mixed. A third study from Columbia University sponsored by the National Institutes of Health is currently in press, and it shows benefit of longer treatment for patients with persistent neurologic symptoms due to chronic Lyme disease. Thus Dr. Masur's statement is both inaccurate and out of date.
Dr. Masur also makes the point in bold letters that "long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment". What he fails to tell you is that long-term antibiotic treatment is used routinely in patients with serious infectious diseases, such as the case of Andrew Speaker, the attorney with resistant tuberculosis who led the CDC on a global chase before he was quarantined and treated for his disease. Nobody would argue that Mr. Speaker should not receive the full course of antibiotic treatment necessary to eradicate his infection (up to two years of therapy). However when it comes to Lyme disease, such treatment is branded as "dangerous", despite the fact that antibiotics are generally well tolerated by patients and regarded as safe by the Food and Drug Administration.
And why does IDSA consider this treatment dangerous? Because they refuse to look at the facts. For example, a homecare company with extensive experience in treating patients with intravenous antibiotics for chronic Lyme disease submitted a study to IDSA for presentation at their annual meeting. The study showed that in patients who received intravenous antibiotic treatment for an average of four months, the mortality rate was zero, and the rate of side effects was less than 1%. The IDSA response to this report? They rejected the study for presentation and refused to look at the data. Once again, there is no convincing an organization that refuses to listen to the opposite argument. It is particularly sad to see that the sources cited at the end of Dr. Masur's letter in support of his views are not articles from the peer-reviewed medical literature but rather misleading reports from Forbes Magazine, the Washington Post and Newsday.
ILADS urges the governors of all states to support federal and state legislation intended to protect doctors who specialize in treating Lyme disease against the misleading and uninformed views of IDSA. ILADS urges you to support adequate treatment for patients suffering from chronic Lyme disease, and we urge you to consider the research information that has been suppressed and ignored by IDSA. If we continue to ignore this information, the Lyme epidemic will continue to spread with no end in sight.
Governor Corzine, August 28, 2007, marks the 44th aniversary of the famous "I have a dream" speech by Rev. Martin Luther King, Jr. The members of ILADS and the Lyme community have a dream, and it is not very different from Dr. King's. Our dream is to see patients with chronic Lyme disease treated with dignity and respect by the entire medical community, so that informed physicians can treat those patients in a caring and compassionate manner without fear of discrimination, derision and figurative shotgun blasts from medical boards and medical societies. This is our simple dream, and I urge the governors of our nation to help us make this dream come true.
Sincerely,
Raphael Stricker, MD President, ILADS
cc: President George W. Bush Governor Arnold Schwartzenegger Governor Mitt Romney Senator John McCain Mayor Rudolph Giuliani Senator Hillary Rodham Clinton Senator Barack Obama Senator John Edwards Secretary Mike Leavitt Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
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tears and goosebumps....what a well-targeted response.
woops, i see he did send cc to Bush, too!
North.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Boomerang
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Member # 7979
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What a great letter! The word is getting out....thank God.
Posts: 1366 | From Southeast | Registered: Sep 2005
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bettyg
Unregistered
posted
here's my post with Masur's letter in activism, hints on writing rebuttal from Wisc., and my copy of a letter I'm emailing hopefully to GOV. CORZINE tomorrow if I can find his email! it's 6 pages so don't want to mail it plus to others on the list!
well done Raphael! liked the cc list of strongest presidential candidates shown with Bush as no. 1 receiver!! thanks sarah!
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Beverly
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Member # 1271
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What a wonderful letter, made me tear up too.
Posts: 6638 | From Michigan | Registered: Jun 2001
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bettyg
Unregistered
posted
here is what i was busy doing last night on sending individual emails to the following CC list with the exception of:
bush, leavitt, and last 2 people on list; need help finding emails for leavitt and other 2 people shown if anyone can help me!
C: President George W. Bush Iowa's Gov. Chet Culver..send to YOUR state's gov! Senator Hillary Rodham Clinton Rep. Chris Dodd Senator Barack Obama Senator John Edwards Governor Mitt Romney Senator John McCain Mayor Rudolph Giuliani
Secretary Mike Leavitt Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA
i'd fill in each form letter than copy/paste my letter in full there, and send! MY LENGTHY LETTER WENT AS IS; no part 2 of 2 was needed!
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
from CALDA
September 1, 2007
The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001
Dear Governor Corzine:
We are writing to balance the picture painted by Infectious Disease Society of America (IDSA) president Henry Masur in his August 7 letter to you.
We find it appalling that a respected medical society like the IDSA has chosen to oppose patient interests at every turn. Professional societies have an obligation to promote the welfare of patients by improving the quality of life for those seriously ill. Where significant disagreement regarding treatment protocols exists, responsible medical societies acknowledge the divergence of professional opinion and do not attempt to suppress treatment options. The IDSA is aware that there is considerable controversy regarding the treatment of Lyme disease, but its guidelines do not acknowledge this controversy or provide patients with treatment options.
Two medical societies, the IDSA, and its competitor, the International Lyme and Associated Diseases Society (ILADS) offer divergent treatment approaches. Both societies have published peer-reviewed guidelines that are listed on the National Guidelines Clearinghouse sponsored by the United States Department of Human Health Services. Under the IDSA guidelines--which have a high failure rate for patients with chronic Lyme--those who fail to respond to the IDSA protocols are denied any further treatment.
ILADS physicians remain willing to treat these seriously ill patients and provide the only viable treatment option for these patients. Patient legislative efforts are primarily aimed at protecting their right to receive effective treatment for their illness. These legislative efforts are essential because not only does the IDSA deny treatment to these patients, it also misuses its position of power in the medical community to drum its competitors out of practice through unprofessional conduct actions. The Connecticut attorney general has launched an antitrust investigation of the IDSA for restraint of trade and exclusionary practices in the formulation of its guidelines.
The IDSA's response to this investigation has been to step up its efforts to thwart patients' efforts to obtain care through legislative action. One would be hard pressed to find another medical society that has so pitted itself against patient care. This kind of attack on people with cancer or mental illness would be inconceivable and it should not be tolerated here.
Despite the IDSA's claim that there is no evidence that longer term treatment works, there are studies supporting both the concept that Lyme bacteria persists in the body after short term treatment and that retreatment is helpful. The most recent NIH-funded study was completed at Columbia University and is pending publication. The IDSA was aware of this study at the time it developed its new guidelines, but refused to consider these findings or delay the publication of its guidelines, even given the caliber of the new study. Moreover, five non-controlled studies support longer-term treatment protocols.
As noted previously, the ILADS guidelines are posted on the National Guidelines Clearinghouse and were required to comply with evidence-based medicine standards to qualify for posting. This debate is not about whether evidence exists, but about who selects and interprets the evidence. After the Connecticut Attorney General launched its investigation into the IDSA, members of the IDSA guidelines panel sought to shore up their beleaguered guidelines by having another medical society issue cookie-cutter guidelines, which the IDSA in turn endorsed. These guidelines by the American Association of Neurologist were then cited by the IDSA as independent corroboration of the IDSA's guidelines. However, the guidelines are hardly independent. Three members of the IDSA panel served on the AAN panel. The overlapping panels are not disclosed and, in view of the pending Attorney General action, represent an extraordinary conflict of interest.
ILADS doctors and their patients have found that longer, more aggressive treatments are effective and relatively safe. Patients accept the risks of treatment because without it their quality of life is equivalent to that of patients with congestive heart failure. We are grateful to the physicians who give us that choice. Many of us are now well. We urge you to resist attempts to limit patients' access to health care.
Sincerely yours, Phyllis Mervine President, CALDA
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
quote:Originally posted by bettyg:
bush, leavitt, and last 2 people on list; need help finding emails for leavitt and other 2 people shown if anyone can help me!
Secretary Mike Leavitt Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA
posted
Problem is, That Doctor Demarco who was just busted for not giving the ALS patients their promised stem cells was on Corzine's Lyme disease council for Atlantic County.
Thats doesn't bode to well for the cause...
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posted
These letters go a long way with us here in NJ and our LD support group. We have seen an alarming and increasing trend of doctors stopping well short of the latest protocols that experienced LLMDs in other states are employing for those patients with severe cases. Some of these doctors are classified according within the community as experts.
Thank you for passing the info. along
Posts: 77 | From Morris County, NJ | Registered: Jul 2004
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posted
Great letter! Thank God for ILADS. Dr. S has done an amazing job this year. Imagine the stress involved with being a Lyme literate MD, and then how much more to be a leader, fighting this insane uphill battle against the IDSA, staying on top of the politics and research, and having a full practice of sick patients too!
How do we thank ILADS for what they do for us? Where would we be without them...
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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