http://www.vpr.net/news_detail/97995/lawmakers-consider-coverage-long-term-lyme-disease/
Lawmakers Consider Coverage Of Long-term Lyme Disease Care
Tuesday, 04/02/13 7:34am
A bacterial disease spread by tick bites is getting attention this week in the Statehouse.
Lyme disease patients and their advocates are pushing for a bill that requires insurance companies to cover long-term antibiotic care for the debilitating illness.
The bill highlights a debate in the medical community about the most effective treatment, because it sanctions a medical practice that critics say is not recommended by state and federal agencies.
Grace McGrath supports the bill. She considers herself one of the lucky ones, even through she got very sick from Lyme disease.
"If I had followed the recommendations of the doctors that I initially saw I can't imagine where I would be today. I would not be working. I would not be functioning," she said.
McGrath is a Middlebury psychologist who was bitten by a tick in 2005. She came down with the typical flu-like symptoms, took antibiotics, felt better for awhile, but then the disease returned with a vengeance.
After seeing two more doctors, she finally went to a physician who specialized in Lyme patients. He prescribed an aggressive, longer term course of antibiotics. Finally, the disease was knocked down.
"I am so fortunate I was able to get in with him," she said. "And I credit him with my recovery."
That doctor is no longer treating Lyme patients. And patients say they've had difficulty finding doctors who are knowledgeable about the disease, particularly how to treat it in its advanced stages.
If the disease is caught early, a patient can be cured quickly with a few weeks of a common antibiotic. But if the bacteria remain in the body, the effects can be devastating. Lyme disease can even cause neurological disorders as the bacteria infect the brain.
So advocates are pushing for legislation that would require insurance companies to cover a long-term course of antibiotics. And the bill would indemnify physicians from disciplinary action if they followed the lengthier drug regimen.
The current standard of practice in Vermont is a short course of antibiotics. But McGrath says that approach doesn't always work for the disease's later stages. The Vermont bill is modeled after a law on the books in other New England states.
"Other state, recognizing that that's not always the right protocol for people who have chronic Lyme, have put protections in for doctors, because sometimes insurance companies don't want to pay," she said.
Vermont Health Commissioner Harry Chen does not support the bill. He said the long-term treatment doesn't conform with recommendations from his department, the National Institutes for Health, and the federal Centers for Disease Control.
Chen said taking antibiotics for years poses risks, including making bacteria more drug resistant.
"If we start mandating an insurance reimbursement, we're essentially saying this is ...medically necessary and supported by the evidence," he said. "So I think that's creeping in that area where politics and science are mixing in that area that is potentially harmful."
Chen, a former emergency room physician, agrees with the patient advocates on one thing: the incidence of Lyme in Vermont has skyrocketed from just a handful a decade ago to 500 to 600 in recent years.
"I want to make it clear this are real people with real diseases and some of them were, you know, misdiagnosed," Chen said.
Meanwhile, the Vermont Board of Medical Practice - the disciplinary body overseeing physicians - voted last month not to support the bill.
