New bill would protect physicians who prescribe long-term therapy
by Debra Neutkens
Staff Writer
Published: Tuesday, September 29, 2009 8:53 PM CDT
St. PAUL — Those who suffer chronic, debilitating Lyme disease have only a handful of doctors, maybe three in the state, willing to treat them.
There are probably more, but those physicians are forced to fly under the radar when it comes to aggressive treatment for the tick-bite malady.
Legislation introduced at the Capitol recently by Sen. John Marty, DFL-Roseville, and Sen. Ray Vandeveer, R-Forest Lake, hopes to change that.
Senate Bill No. 1631 allows a doctor to treat chronic Lyme disease without fear of disciplinary action by the state Board of Medical Practice. The legislation is based on a Connecticut law allowing physicians to use their best clinical judgment when treating Lyme disease.
Three states, Connecticut, Rhode Island and California, have passed similar bills to protect physicians.
Marty, who is chair of the Senate health committee, acknowledged a lack of consensus on Lyme treatment in a statement released last month. Even doctors in other states feel they will face severe repercussions for treating patients, he said after a lawmaker’s meeting with state and national Lyme health experts.
One of those experts was Dr. Betty Maloney, a family practice physician from the Forest Lake area who advocates for the Minnesota Lyme Action Support Group.
“It is a principle of medical ethics that patients hear treatment options, including risks and benefits of alternative treatments to make a choice,” Maloney told the Press. “Now patients with persistent Lyme disease hear only strategies advanced by the Infectious Diseases Society of America (IDSA). They don’t learn the alternatives – longer antibiotic therapy or combinations of antibiotics – to make an informed choice.”
Marty and Vandeveer’s bill would make it possible for physicians to prolong administration of antibiotics longer than the recommended 28-day treatment course by removing concerns about medical board interference, noted Maloney. She attended a July IDSA hearing in Washington, DC, to discuss current guidelines for treating Lyme disease, submitting more than 80 pages of research analyses on behalf of the International Lyme & Associated Diseases Society. The 2006 IDSA guidelines state there is no evidence long-term antibiotics cure chronic Lyme.
The issue is complicated because the disease is complicated, Maloney said. “I am not trying to promote a particular agenda beyond wanting patients to get the care they need. I want the science to speak. In some instances, we have lost track of the science and become political on this issue. I’m not sure why it’s political, but if the disease is defined in very narrow fashion, insurance companies have the right to deny care.”
A medical ethicist was asked to submit guidelines for selecting review panel members, according to Maloney. Anyone who made $10,000 related to care and treatment of Lyme patients was omitted from the panel. “Essentially all physicians who treat Lyme were eliminated,” Maloney pointed out. “That was ludicrous. So no one on the panel really understands nuances of treating a Lyme disease patient; who understands the importance of treating co-infecting organisms. The panel doesn’t understand the level of fatigue in Lyme patients and how sick they are — fatigue like ‘I can’t get out of bed.’ Lyme patients aren’t working. They have cognitive issues. The spectrum is wide.”
After review of written submissions and hearing transcripts, the IDSA panel is expected to make a decision on whether guidelines need revision by the end of year.
Meanwhile Lyme disease cases are dramatically increasing in Minnesota, which is considered a hot spot for tick-borne illness. Anoka, Washington and Chisago County are all included on maps of high-risk areas for tickborne disease.
According to Maloney, tick numbers change season to season and by zip code. Pockets of infection have to do with trees, especially oak trees, which attract rodents.
The primary host for the blacklegged, or deer, tick is not deer, but mice. The first stage of its life cycle, the larvae, becomes infected with the bacteria responsible for Lyme disease, Borrelia burgdorferi, after feeding on diseased mice. The next stage is the poppy-seed-sized nymph, the stage that causes the most human cases. Nymphs live in leaf litter under oak trees. Woodpiles are another source of infestation because mice nest there.
Left untreated, Lyme disease can cause a multitude of problems, including paralysis, arthritis, flu-like illness, irregular heartbeat, and loss of ability to concentrate, according to the Minnesota Department of Health. It can infect any organ, including the brain, heart, joints and nervous system. It has also been called the “Great Imitator” because it can look like other diseases. Many sufferers have been misdiagnosed with conditions such as fibromyalgia or chronic fatigue. If the brain is infected, the misdiagnosis might be MS, ALS or Parkinson’s.
If the Marty/Vandeveer legislation passes, will doctors who treat Lyme be confident they won’t be investigated? “Employers might still mandate how physicians treat Lyme, but it is one more obstacle to access removed,” replied Maloney. “I want physicians and patients to go back to relationships. The bill helps that. It allows physicians to more fully enter into a relationship with Lyme patients.”
For more articles on Lyme disease, access Press Publications archives at www.presspubs.com.
Editor’s Note: Dr. Maloney has just published an article on “The Need for Clinical Judgment in the Diagnosis and Treatment of Lyme Disease,” in the Journal of the Association of American Physicians and Surgeons, www.jpands.org. Find it at
http://www.jpands.org/vol14no3/maloney.pdf.
