Topic: ENVITA'S protection for lyme drs increases as treatment guidelines are revised 8.6.09
Protection for Lyme Physicians Increases as Treatment Guidelines are Revisited
On July 16, 2009, Connecticut Governor M. Jodi Rell signed into law a bill that protects physicians who treat chronic Lyme Disease.
The bill passed unanimously through both houses of the Connecticut General Assembly.
The new law is a victory for patients and physicians alike.
Chronic Lyme patients have found that doctors are extremely hesitant to treat them for the disease as the Infectious Disease Society of America (IDSA) does not recognize chronic Lyme Disease, and their guidelines state that patients should receive no more than four weeks of antibiotic treatment.
Treatment of chronic Lyme Disease, however, often requires long-term antibiotics, a practice for which physicians are being reprimanded by both medical boards and insurance companies who cite the IDSA guidelines.
Some physicians have even lost their licenses for extended antibiotic treatment.
The end result is a ``chill effect'' whereby patients have to travel in search of doctors who will treat them for chronic Lyme Disease.
But under Connecticut's new law, physicians cannot be subject to disciplinary action for treating a patient with long-term antibiotics, so long as the Lyme disease diagnosis and treatment is documented in the patient's record by the physician.
The new law undoubtedly protects physicians' rights to treat their patients the way they see fit.
In a July 16, 2009 press release issued by the Governor's Office, Governor Rell stated that ``We do understand. We understand that this disease can shatter lives. We understand it can rob someone of their livelihood. We understand it can alter someone's future forever.''
She noted that ``It is a very complex disease that can affect people differently. We recognize that Lyme disease patients must have the freedom to choose which treatment best meets their needs.''
In passing this new law, Connecticut joins New York, New Jersey, Rhode Island, and California in explicitly protecting physicians' treatment of chronic Lyme Disease.
Lyme disease was first discovered in Lyme, Connecticut in 1975. Given that Connecticut is viewed as the epicenter of the disease, it is hoped that Connecticut's passage of this law will encourage other states to do the same.
The bill, however, endured its fair share of controversy. Several opponents testified and wrote letters stating that chronic Lyme disease is not supported by any published scientific data, and instead, is promoted by a small group of physicians.
But the voices of these opponents were completely drowned out by the number of patients, doctors, and advocates who supported the bill.
The controversy ultimately stems from the 14-member panel of the IDSA that wrote the 2006 Lyme disease treatment guidelines, which deny the existence of chronic Lyme disease.
The IDSA is a national medical group whose purpose, according to its website, is to improve healthcare in areas related to infectious diseases.
But these guidelines have been widely criticized as inadequate and disastrous for those infected with the disease.
According to a recent John-Hopkins study, the IDSA-endorsed two-tiered testing procedure misses 75% of positive Lyme cases. (1)
The guidelines also recommend only two to four weeks of antibiotic treatment for Lyme disease, yet research has shown that antibiotic treatment for 14 to 21 days results in a 26-50% failure rate, as the stubborn disease-causing bacteria persists much longer in the body. (2), (3)
In dismissing the existence of chronic Lyme disease, one panel member instead characterized it as ``more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.''
Out of the 400 scientific articles cited by the panel as support for their guidelines, about half were written by the panel members themselves.
Meanwhile, a large body of contradictory scientific literature was ignored.
The Attorney General of Connecticut, Richard Blumenthal, even conducted an anti-trust investigation of the IDSA, suspecting that the guidelines process was tainted by the panel members' conflicts of interest.
Out of the 14 member panel,
6 of the panelists or their universities hold patents associated with Lyme disease or its co-infections;
4 received funding from test kit manufacturers for Lyme disease or its co-infections;
4 were paid by the insurance companies to write Lyme policy guidelines or serve as consultants in legal cases; and
9 members or their universities received money from Lyme disease vaccine manufacturers.
Allowing diagnostic and treatment guidelines to be written by panel members who are tied to manufacturers that have a stake in the outcome raises serious and obvious concerns.
Attorney General Blumenthal charged that the panel's guidelines were preventing many seriously ill patients from receiving the care they needed.
The investigation ended in 2008 with a settlement whereby the IDSA promised to create a new panel to reevaluate its treatment guidelines in 2009.
On July 30, 2009, landmark hearings were held in Washington D.C. to review these guidelines.
Dr. Daniel Cameron, President of the International Lyme and Associated Diseases Society (ILADS) was one of the presenters at the hearing.
ILADS has consistently advocated for Lyme disease patients and has put forth their own Lyme treatment guidelines, which they argue should be the standard of care.
In contrast to the IDSA guidelines, the ILADS guidelines recommend long-term treatment with antibiotics for chronic Lyme sufferers.
In a press release, Dr. Cameron stated that as a result of the hearings at the nation's capitol,
``[t]he medical establishment will be forced to consider the strong scientific evidence that Lyme Disease can become a persistent, long-term infection that may require more aggressive treatment than what is allowed under the current treatment guidelines.''
Laws such as that recently passed by Connecticut have placed even more pressure on the IDSA to take another look at their guidelines, as such laws go directly against their prescriptions.
If the IDSA revamps its guidelines and recognizes chronic Lyme disease and attendant treatment with long-term antibiotics, it will have far reaching consequences for patients.
Not only will patients' lives be saved by proper diagnostic criteria and treatment guidelines, but patients will also be one step closer to gaining insurance coverage for such treatment.
Currently, insurance companies routinely deny coverage to patients treated with long-term antibiotics, citing the IDSA guidelines.
Furthermore, if the IDSA revamps its guidelines, it will hopefully make legislative efforts such as that recently undertaken in Connecticut unnecessary.
Doctors across the country would be free to practice medicine and adequately treat their patients without fear of losing their medical licenses.
The panel states that it will hopefully issue a final report regarding the guidelines by the end of the year.
Until then, Lyme patients will have to wait and hope that the medical establishment will finally make some much needed changes.
Full Text of the Connecticut Law: An Act Concerning the Use of Long-Term Antibiotics for the Treatment of Lyme Disease
Envita's Lyme Disease Educational Section
Envita's Whiteboard (contains Lyme Disease Videos and Animation)
(1) Coulter, P, et al. Two-Year Evaluation of Borrelia burgdoferi Culture and Supplemental Test for Definitive Diagnosis of Lyme Disease. Clin. J. Clin. Microbiol. 2005; 41: 5080-5084.
(2) Wahlberg, P, Granlund, H, Nyman, D, Panelius, J, and Seppala, I. Treatment of late Lyme borreliosis. J. Infect. 1994; 29(3): 255-61.
(3) Oksi, J, Marjamaki, M, Nikoskelainen, J, and Viljanen, M. Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Ann. Med. 1999; 31(3): 225-32.
i recently signed up for something from them where they had detailed notes on spring lyme conference in kansas city earlier this year ...
they GAVE ME permission to break up more if needed or whatever needs to be done for us NEURO LYME patients. On Wed, May 27, 2009 at 4:01 PM, envita blog <[email protected]> wrote:
Hello again Betty!
You are most welcome. Thank you very much for putting our article in a format that will be more easily accessible for Chronic Lyme Disease patients.
It certainly sounds like you have your hands full helping others! Good for you.
Despite your own struggles, you are still putting your all into reaching out to others and providing them support and guidance in their journey.
You might find that the video format of our Whiteboard will be easier to follow than the written articles.
I can only imagine how frustrating and difficult the neuro aspects of the disease must be.
Please feel free to share our educational tools with as many people as you think will benefit from them.
Also, we try to cover a variety of topics on our Natural Issues blog, but I will send you an email the next time we write about a Lyme-related topic so that you can check it out and decide if it will be helpful for those in your community.
Again, thank you for your email. I know you are VERY busy, but just in case you didn't see the Lyme educational section on our main website, here you go:
You are welcome Betty
Posts: 130 | From Central NY | Registered: Jul 2009
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Frequent Contributor (1K+ posts)
Member # 9734
It said "Connecticut joins New York".
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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ali, feel free to write envita; i only posted...
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