AMNews: Lyme disease debate provokes treatment divide, legal action

Lyme disease debate provokes treatment divide, legal action
In what may be a first, the government has taken steps to investigate
the drafting of medical guidelines.

By Susan J. Landers, AMNews staff. Dec. 25, 2006.

Washington -- Dueling guidelines developed by two medical organizations
for treating patients with Lyme disease have sparked such an uproar
that Connecticut's attorney general has stepped in to see if one side
ran afoul of antitrust statutes.

The Infectious Diseases Society of America and the International Lyme
and Associated Diseases Society each assembled expert panels that sat
down separately and examined the evidence on the nature of and best
treatment for this tick-borne illness. But they arrived at different
conclusions.

With this article
* Treating Lyme disease
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IDSA, a scientific organization of physicians, scientists and other
health care professionals who specialize in infectious diseases,
characterizes Lyme disease as primarily acute and treated successfully
in the vast majority of cases with, at most, a few weeks of
antibiotics. ILADS, which is a multidisciplinary medical society
focused on the diagnosis and treatment of Lyme disease, holds out the
possibility that the disease is chronic and may need months of
antibiotics.

The differing conclusions call into question how best to treat the more
than 20,000 people who contract the infection each year. Although Lyme
disease has been reported in nearly all states, most cases are found in
the Northeast, mid-Atlantic and North Central regions of the nation.
Left untreated, the infection can spread to joints, the heart and the
nervous system, according to the Centers for Disease Control and
Prevention.

It is not unusual for different medical and scientific groups to take
varying clinical positions on specific conditions. But this particular
situation quickly has become far from typical.

The battle over how to treat the infection grew so heated that, in
Connecticut, the state in which the disease was first recognized and
named, Attorney General Richard Blumenthal began an investigation in
mid-November. "We issued a subpoena to the IDSA because its guidelines
may severely constrict choices and legitimate diagnosis and treatment
options for patients," he said.

20,000 people contract Lyme disease each year.

Advocacy groups in the state and elsewhere had expressed outrage over
the IDSA guidelines and applauded Blumenthal's action. "Clinical
guidelines now drive the standard of care, and these IDSA guidelines
have already been published on the CDC Web site," said Pat Smith,
president of the Lyme Disease Assn. The advocacy community contends
that the guidelines deny the existence of chronic Lyme disease and
could lead to limits on physicians' treatment options.

IDSA, which notes that it is responding fully to the subpoena, believes
its guidelines are based on the best that science currently has to
offer. It was the association's development and Nov. 1 publication in
Clinical Infectious Diseases of an updated version of its guidelines
that resulted in the current furor.

For its part, ILADS finds the rival guidelines to be very restrictive
to the point of limiting treatment options and even excluding certain
treatments that have been used by physicians for years, said the
group's president, Raphael Stricker, MD.

What's more, insurance companies may deny coverage of treatments not
supported by the infectious diseases society guidelines, said Daniel
Cameron, MD, MPH, who led the panel that developed ILADS' guidelines.

These perspectives have contributed to the guidelines' scrutiny.

"At this stage, to debate the guidelines is a bit like debating
religion or science," said Paul Auwaerter, MD, clinical director of
Baltimore's Johns Hopkins School of Medicine's Division of Infectious
Diseases and a fan of the IDSA guidelines.

"I don't think there is anyone in the middle," he noted. "I'm sure both
of us are right in some regards and wrong in other regards. But that's
always the case with medicine."

Gary Wormser, MD, who led the IDSA team in the development of its
guidelines, pointed out that they are, after all, recommendations and,
according to a statement included on the document's first page, are not
intended to replace physician judgment.

"We don't dispute that there are patients who had Lyme disease and who
continue to have symptoms, whatever the reason," he said. "We think
this illness is a real problem and definitely needs more research and
attention. But I think where we differ is the idea of treating these
individuals indefinitely with antibiotics."

Antibiotic overuse has been seen as a major contributor to the rising
number of infections that are resistant to these once-powerful weapons,
and the IDSA has been among those campaigning for their judicious use.

ILADS supporters point out that diseases such as tuberculosis are
treated with long-term antibiotic use and no one questions that
treatment's validity and effectiveness.

Although a spectrum of opinions is not unusual in medicine, the issuing
of a subpoena is rare when it comes to guidelines. "We have done other
investigations of the health care industry, but none, as far as I can
recall, having to do with guidelines," Blumenthal said. His inquiry
triggered a variety of responses from those closely involved.

"While I don't support in principle the government interfering with
medical affairs, I think in this situation, IDSA has so overstepped its
bounds and abused its power in promulgating these guidelines that I
think there is no other option," said ILADS' Dr. Stricker.

The response from Dr. Auwaerter, an IDSA guideline proponent: "My sense
is that [Blumenthal] won't find anything improper."

Dr. Cameron's: "The attorney general's response is in reaction to the
frustrations patients are having with getting more attention to the
problems of chronic Lyme disease." Dr. Cameron, who was the ILADS panel
leader, and lives in Westchester County, N.Y., coincidentally just a
few miles from Dr. Wormser, pointed to one study showing that
significant numbers of Lyme patients in his area had persistent
symptoms.

In general, guidelines continue to have a key place in physicians'
toolkits -- a likely reason why this debate has been so intense.

"There is so much data out there that we rely on expert panels to
review available evidence and come up with recommendations," said Dr.
Auwaerter.

More than 1,800 guidelines are posted under the "disease/condition"
heading on the federal National Guideline Clearinghouse Web site. Both
IDSA and ILADS guidelines are there. The site gets more than 100,000
visits each month, said Jean Slutsky, MSPH, director of outcomes and
evidence at the Agency for Healthcare Research and Quality, the
overseeing agency.

Back to top.
ADDITIONAL INFORMATION:
Treating Lyme disease

The National Institutes of Health has posted the following treatment
information on its MedlinePlus Web site for Lyme disease:

* Antibiotics are prescribed based on disease stages and
manifestations. Doxycycline, tetracycline, cefuroxime, ceftriaxone and
penicillin are some of the choices.
* Anti-inflammatory medications, such as ibuprofen, are sometimes
prescribed to relieve joint stiffness.
* If diagnosed in the early stages, the disease can be cured with
antibiotics. If left untreated, complications involving joints, the
heart and the nervous system can occur.

Back to top.
Weblink

Centers for Disease Control and Prevention on diagnosis, treatment and
prevalence of lyme disease (www.cdc.gov/ncidod/dvbid/lyme)

National Guideline Clearinghouse's list of Lyme disease guidelines,
including those of the International Lyme and Associated Diseases
Society and the Infectious Diseases Society of America
(www.guideline.gov/search/searchresults.aspx?type=3&txtsearch=lyme&num=20)

Infectious Diseases Society of America (www.idsociety.org)

International Lyme and Associated Diseases Society (www.ilads.org)


Copyright 2006 American Medical Association. All rights reserved.



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