The legislation states Connecticut doctors will not face retaliation if they choose to diagnose chronic Lyme disease and treat it with long-term antibiotics.
"It does not say a professional should do something," Harris said. "It just says they cannot be disciplined for doing so."
Several senators spoke in favor of the legislation and told personal stories of battles with Lyme disease.
"It's not a one size fits all disease," state Sen. Dan Debicella, R-Shelton said, noting an unidentified family member has struggled with the illness. "The way it impacts one person can be very difficult from the way it impacts another."
Most interesting is that the one Senator who had originally tried to prevent the bill from coming up for a vote by removing it from the consent calendar changed his/her mind and voted in favor of it. While the Senator’s identity remains unknown, a clue as to who it may have been was found in a related article from today’s Stamford Advocate:
But state Sen. Len Fasano, R-North Haven said before the vote that he was torn over the bill.
Fasano said he understands the plight of Lyme disease victims but has also heard from physicians in his district who are very concerned about the precedent set by the legislature's choosing to ignore "evidence based medicine" and come down on the side of chronic Lyme believers.
Doctors affiliated with Yale University’s Lyme disease research center have long been among the most ardent deniers of chronic Lyme disease, so it should probably come as little surprise that a Senator in close proximity to the medical school was heavily lobbied against the bill by local physicians.
A copy of the official press release from Lyme disease advocacy groups who were involved with the legislation is included below.
In late 2007, I wrote an article that was posted here on MyLeftNutmeg describing the battle royale that was being waged in the medical community over the diagnosis and treatment of Lyme disease. That article, Attack of the Chronic Lyme Denialists, illustrated how greed and conflicts of interest among a small group of researchers is corrupting the science and medical guidelines which affect the standard of care used by doctors across the country.
That article was followed up by another piece which detailed the fallout from this battle, the prosecution of Dr. Charles Jones, a New Haven area pediatric Lyme specialist with such a sterling record of success in the treatment of pediatric chronic Lyme disease that patients have come to him by the thousands from literally all over the world. Unfortunately, the small cabal of researchers who control the standard of care for Lyme disease, along with the Infectious Diseases Society of America, which publishes their Lyme disease diagnostic and treatment guidelines, the insurance industry, and the CT Department of Public Health, have chosen to enforce a very narrow and scientifically unsupported definition of Lyme disease, one that completely dismisses the possibility that persisting Lyme disease symptoms after standard treatment regimens could be caused by persisting infection.
They enforce these standards despite peer reviewed science proving that the infection can persist and despite the fact that there is no diagnostic test in existence that can either prove or disprove whether a patient's ongoing symptoms are caused by persisting infection. Dr. Jones is among those who have chosen to treat chronic Lyme disease with longer than IDSA recommended courses of antibiotics, and as has happened to chronic Lyme doctors across the country, he was targeted by the state medical board as a result. You can read more about the bogus case against Dr. Jones here: CT Pediatrician to be Sanctioned for Lyme Disease Treatment.
In 2009, sympathetic legislators, some of whom have experienced the ravages of chronic Lyme disease in their own families, drafted a bill which would ensure that doctors in this state would be free to treat Lyme disease using longer courses of antibiotics without fear of retribution by the state medical board. That bill recently passed the CT House with a unanimous 137-0 vote. It was headed for a vote in the Senate this week, but one unnamed Senator has apparently objected to the bill being included on the consent calendar which would guarantee its coming up for a vote, no doubt hoping to run out the clock on it. The bill can still be brought up for a vote, but it must first be brought up for discussion. We need your help in lobbying the Senate to bring this bill to the floor and vote favorably on it before the legislative session ends.
Following (below the fold) is the Action Alert related to this matter. More information on this bill and related video of testimony and debate can be found here: http://www.lymerights.org/html/ct_lyme_bill_6200.html
Elizabeth Ellis, of Arlington, Mass., attends Jone's licensure hearing with her three children, Andrew, 9, Louisa, 7, and Olivia, 5, all of whom Jones has treated for Lyme disease. The woman in black is Susan Marra, Jones' naturopath. (Shana Sureck, Hartford Courant)
In my recent commentary, "Attack of the Chronic Lyme Denialists", I explained how there is a battle raging over the diagnosis and treatment of Lyme disease, particularly with regard to whether Lyme related symptoms that do not resolve after 30 days of antibiotics (the currently accepted "standard of care") are the result of ongoing infection or some other undefined
condition. I also described how a small but powerful cabal of academic researchers whose beliefs lie on the short term treatment side of the debate have chosen to settle the issue not through rigorous science, but rather through brute political force.
Perhaps the most insidious way such force has been employed is through the use of state medical boards to drive uncooperative clinical doctors out of practice. Successfully removing just one chronic Lyme doctor instantly
puts an end to the insurance claims of hundreds if not thousands of patients, and puts and end to the need for assistance from countless local hospitals wishing nothing to do with treatment methods which they consider unnecessary and dangerous.
Such is the case with Dr. Charles Ray Jones, who has successfully treated thousands of children suffering from chronic Lyme disease. Jones has spent the last year of his life not only seeing patients 6 to 7 days a week, but also regularly commuting from his New Haven area medical practice to Hartford for disciplinary
hearings resulting from a complaint filed by a divorced father seeking to gain custody of his children and avoid responsibility for medical expenses that the mother could not afford.
(An interesting and well-sourced discussion of chronic Lyme disease and institutional pressures against wider acknowledgment and diagnosis of the disease... it's nearly impossible to excerpt, so click "there's more" for the whole article. - promoted by mattw)
by Steven Gottschalk
November 12, 2007
"No men among us need refreshment and renovating more frequently than those who occupy positions in
our schools of learning. Upon none does intellectual staleness more readily
steal "with velvet step, unheeded, softly," but nonetheless
relentlessly....These unrefreshed, unregenerate teachers are often powerful
instruments of harm, and time and again have spread the blight of blind
conservatism in the profession."
- Sir William Osler, Counsels and Ideals
For more than a decade, a battle royale has been waged over the diagnosis and treatment of Lyme disease. An excellent overview of the controversy is provided by Dr. Raphael Stricker, President of the International Lyme and Associated Diseases Society (ILADS), and his associate, Lorraine Johnson in an article published by the medical journal, Expert Review of Anti-infective Therapy:
VALHALLA - Hundreds of people rallied yesterday outside Westchester
Medical Center to decry new treatment guidelines for Lyme disease that
discourage the use of long-term antibiotics to treat lingering symptoms.
The voluntary guidelines were issued last month by the Infectious
Diseases Society of America; the lead author was Dr. Gary Wormser, chief of
the division of infectious diseases at the hospital.
Protesters from as far away as California and Texas waved a sea of
neon-green signs at passing cars at the intersection of Woods and Grasslands
roads, some of which personally mocked the doctor with messages like, "Wormser
lies ... Patients Die" and "Dr. Wormser - You Make Me Sick!"
Others read, "Gross Medical Neglect," and "Stop the
Ignorance."
"There (have) been 18,000 papers published on lyme
disease,'' Stricker said. "So saying you're looking at 400 means you've
only looked at 5 percent of the research."
"The evidence just continues to grow and grow on this,'' Phillips
said. "To ignore a whole section of this research, as if it doesn't
exist, raises questions for me.''
Because of the prestige the infectious disease society carries, lyme
activists say insurance companies will now be even more adamant about
refusing coverage beyond 28 days of antibiotics -- something, they say, that
has already begun.
It should come as no surprise that many of the university based researchers
who have long supported such restrictive guidelines, also moonlight as
highly paid insurance consultants and expert witnesses (consulting fees run
several hundred dollars an hour) who testify against
chronic Lyme patients. One has to wonder what role such conflicts of
interest may have played in the development of these new guidelines.
Someone very important DID wonder just that. Connecticut Attorney General,
Richard Blumenthal, has launched an antitrust
investigation against the IDSA last week in order to examine
potential bias and monopolistic practices in the creation of IDSA's
guidelines. Additionally, the International
Lyme and Associated Diseases Society (ILADS), a medical society
representing doctors and researchers who specialize in chronic Lyme disease
and which has published far more comprehensive guidelines, filed a
written demand that the IDSA retract their guidelines.
Lyme disease patients and activists have also taken action, organizing a protest
for 11am this Thursday (Nov. 30th) outside Westchester Medical Center in
Valhalla, NY, home to lead author of the IDSA Guidelines, Gary Wormser.
At last count, 175 patients and their supporters from all over the US planned
to attend.
At 7pm, also on Thursday Nov. 30th, there will be a fundraiser and
partial screening of "Under
Our Skin", an in-process documentary that delves into the
devastating effects of chronic Lyme disease as well as the political war being
waged against the doctors who treat them. The fundraiser will be held at the
public library in Wilton, Connecticut. Representatives from the movie's
award winning production company, Open
Eye Pictures, based in CA, are expected to attend.
Details for both events are included below the fold.
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