Saying new diagnosis and treatment guidelines may harm Lyme disease patients physically and financially, Attorney General Richard Blumenthal is investigating a powerful doctors' group for possible anti-trust violations.
Alexandria, Va.-based Infectious Diseases Society of America may be effectively limiting insurance coverage and medical options through overly strict recommendations for diagnosing and treating Lyme disease, Blumenthal said. The society is a nonprofit organization that represents about 8,300 health care professionals nationwide.
"These rules diminish the options available to doctors and their patients in ways that can sanction insurance company decisions to deny coverage, so they have an economic impact that could be very serious, not to mention the health care effect," Blumenthal said.
A spokesman for the society said its new guidelines, enacted in October, are carefully researched and sound. But they should be seen as suggestions only, and aren't intended to alter any individual doctor's judgment, said the spokesman, Steve Baragona.
"We're not trying to claim that these people aren't suffering, but we're not sure that what they have is Lyme disease," Baragona said. "They may travel to a doctor who doesn't know what's wrong with them and we know that's frustrating for them and for their doctors. If there's some kind of breakthrough in diagnostics, then we'd embrace it, but right now we don't have evidence that what we're looking at is long-term antibiotic therapy."
All agree that a course of antibiotics is the best way to get rid of Lyme disease, a tick-borne illness endemic to southwestern Connecticut that can lead to severe headaches, heart palpitations and arthritis. According to the Connecticut Department of Public Health, 1,810 new cases were reported last year -- a 34 percent increase over 2004.
But physicians, advocacy groups, legislators and patients often disagree about when to designate a wide-ranging group of symptoms as Lyme disease, and how long to administer antibiotics.
According to the society, most Lyme disease patients are cured with a single course of 10 to 28 days of antibiotics, with some requiring a second course. Those suffering "chronic" Lyme disease, where symptoms such as fatigue and joint pain persist, shouldn't get more antibiotics, according to the society.
But the complex and elusive bacterium that causes the disease, Borrelia burgdorferi, may survive in the body through treatment, evading the immune system and short-term antibiotics courses, said town resident Debbie Siciliano, whose son suffered from Lyme disease.
Despite doctors' prescriptions for extended courses of antibiotics, the society's strict guidelines have led to some patients being turned away by pharmacists when they go to pick up the drugs, Siciliano said. In other cases, insurance companies have denied coverage based on the society's recommendations, which appear on the federal Centers for Disease Control and Prevention Web site, Siciliano said.
"They're the people that others look to for answers for infectious diseases and these current guidelines are very restrictive, and this is where it's going to hurt people," said Siciliano, co-president of Time For Lyme Inc. The Greenwich nonprofit organization, an affiliate of the national Lyme Disease Association, raises money for Lyme disease advocacy, research and education.
Blumenthal, who once led an effort to secure mandatory coverage for the disease, said the society's rules may also be against the law. The investigation, which started with last month's administrative subpoena, will look into how the society's doctors developed their guidelines, Blumenthal said.
Critics of the guidelines say the society's panel didn't take into account all the evidence at hand. By effectively preventing patients from choosing their course of treatment, the guidelines may be pushing consumers to favor one group of drug and health-care providers over another, he said.
"I don't want to make those (diagnosis and treatment) decisions -- those are for a doctor and patient to make --�but insurance companies should cover them," Blumenthal said. "They shouldn't be the ones making the determination, so when a new set of rules limits choices and constrains diagnostic treatment opportunities, it may run afoul of the law."
The investigation has no fixed timeline, Blumenthal said, and he hasn't yet received the information detailed in the subpoena.
Baragona said the society is cooperating fully. He added that the society's reasons for not recommending extensive antibiotics courses include avoiding development of a Lyme strain resistant to medication as well as infections caused by intravenously administered drugs.
For Siciliano, the society's position reflects an overly clinical and rigid unwillingness to treat symptoms.
"The bottom line is that a recommendation of 28 days of treatment doesn't have any published information saying that's the right course, there's no test that says at the end of that time you've gotten rid of the bacteria thoroughly, so how do you know what's the right amount?"
Copyright � 2006, Southern Connecticut Newspapers, Inc.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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dmc
Frequent Contributor (1K+ posts)
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Posts: 2675 | From ct, usa | Registered: Jan 2004
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great article!! thank god someone is questioning these guys.
it helps to keep pushing politically. never was politically active, but htis lyme has made me a believer in action
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
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"Baragona said the society is cooperating fully. He added that the society's reasons for not recommending extensive antibiotics courses include avoiding development of a Lyme strain resistant to medication as well as infections caused by intravenously administered drugs."
What about the resilience & virulence of bb caused by innadequate doses or duration of abx?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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