http://vtdigger.org/2013/04/03/lawmakers-hear-conflicting-testimony-on-need-for-lyme-disease-treatment-legislation/
Conflicting testimony on need for Lyme disease treatment legislation
The above graph represents the total number of Lyme disease diagnoses in Vermont from 2002 to 2012. The data from Vermont Department of Health include diagnoses that meet CDC standards and ones that do not, and they also take into account exposures that could be outside of Vermont. The 2012 numbers are provisional.
The prevalence of Lyme disease in Vermont has exploded over the past decade. The total number of diagnosed cases spiked from 37 in 2002 to 623 in 2011, and officials from the Vermont Department of Health speculate that these numbers are well below the actual rate of incidence.
Now, whether lawmakers should get involved in the treatment of confirmed cases has become a point of contention in Montpelier.
At issue are two bills — one in the House and one in the Senate — that allow physicians to “prescribe, administer, or dispense long-term antibiotic therapy” for a patient with Lyme disease or another tick-borne illness. The bills, which are modeled after a Rhode Island law, would give physicians immunity from disciplinary action or license revocation by the Board of Medical Practice for using such methods.
The draft legislation would also require health insurers to provide patients with coverage for long-term antibiotic use.
A nationwide debate flares up in Vermont
On Wednesday, the Senate Health and Welfare Committee and the House Health Care Committee took joint testimony from advocates for the bill. The only input legislators received in opposition to the measure was from Harry Chen, commissioner of the Department of Health and a doctor with 30 years of experience.
Richard Horowitz, a doctor from Hyde Park, N.Y., spoke to legislators on behalf of dozens of advocates present at the hearing. Horowitz is the co-founder of the International Lyme and Associated Disease Society (ILADS). He says he has treated more than 12,000 patients for tick-borne illnesses over his 26 years of practice.
“I have a lot of Vermonters who come to see me in New York,” he said after the hearing. “They are very sick with Lyme disease, and, in part, it’s because (Vermont) doctors are scared to treat the disease.”
While he says New York has no such law to protect doctors from prescribing long-term antibiotic therapy for Lyme disease, he is encouraging Vermont legislators to adopt the proposed legislation.
“It basically gives doctors the ability to use their clinical judgment and not to have to undergo repercussions and fear from a medical board or insurance companies,” he said. “If you’ve got a spreading epidemic on your hands, and doctors are afraid to diagnose it and treat it, this disease is going to get worse.”
But three physicians in state government — Chen, the Green Mountain Care Board’s Allan Ramsay and Rep. George Till, D-Jericho — say that the bill would not give doctors any power they don’t already have.
“The bill, itself, I don’t think solves any problems,” Till said. “It’s clear that if a physician in Vermont wanted to treat long-term Lyme disease with long-term antibiotics that they are free to do that. It’s also clear that the Board of Medical Practice would not discipline somebody for treating long-term Lyme disease.”
The two competing standards
Till, who did not attend the hearing, and Chen said the bill would create a new Vermont standard of care for treating patients with chronic Lyme disease.
According to the Centers for Disease Control (CDC), Lyme disease is usually cured with common antibiotics, if caught in the early stages. When discovered later, symptoms can persist for months and, in some cases, years. This chronic form of Lyme disease is known as “post-treatment Lyme disease syndrome.”
The CDC recommends against long-term antibiotic treatment for chronic Lyme disease. Its recommendation is based on four peer-reviewed, placebo-based studies conducted by the National Institutes of Health last decade. Those studies found that long-term antibiotic therapy does not improve cognitive abilities. While one study found that the treatment improved fatigue, the CDC points to “serious complications” from such treatment, including death.
The website that the CDC links to for these complications belongs to the Infectious Diseases Society of America, a physician group that supports the CDC’s recommendation.
According to Horowitz, there are two trains of thought on Lyme disease treatment: one of the Infectious Diseases Society and the other of ILADS, which recommends longer and repeated courses of antibiotics, if necessary.
“These are the two groups that are looking to help the United States, but we have completely competing viewpoints on how to do it,” he said.
Part of the issue is what Horowitz calls “multiple chronic infectious disease syndrome.”
“The ticks are containing not just Lyme but all of these other infections that are making people sick,” he said. “There’s a lot of debate on the science that’s out there, and doctors need to understand both sides.”
Ellen Read, registered nurse at King’s Daughters Care Home in St. Albans, sides with Horowitz. She grappled with Lyme disease for years before heading out of Vermont to seek treatment.
“I feel that had I been treated until my symptoms resolved, instead of being sick for three years, I would have been sick for three months,”she said after the hearing.
Read wants the health care committees to move on the proposed bills so that doctors feel comfortable treating patients with extended antibiotic treatments.
“What we are hoping it will accomplish is to allow physicians who want to try to treat beyond the CDC recommended guidelines to do so as they see clinically fit,” she said.
Till conceded that although doctors technically have the discretion to prescribe long-term antibiotics, hospitals generally frown upon doctors that deviate from “evidence-based guidelines.”
Insurance, the Medical Society and moving forward
While Horowitz warned that doctors could be forced off an insurance network for prescribing long-term antibiotic treatment for Lyme disease, representatives from Blue Cross Blue Shield of Vermont say they could find no record of such examples.
“After listening to the testimony it’s pretty clear it’s more of a medical issue than an insurance issue,” said Leigh Tofferi, senior lobbyist for Blue Cross. “We cover antibiotics now, and Blue Cross doesn’t put limits on duration.”
He did provide one caveat.
“If a claim was to come to our attention through a member complaint or a quality review, and we had to make a determination of medical necessity on that claim, then we would turn to something like the CDC guidelines, which would say it’s probably not medically necessary and probably deny that claim,” he said. “But, generally, claims are going through because we don’t screen for Lyme disease.”
Paul Harrington, who directs the Vermont Medical Society, said that the physicians’ association is in line with the Vermont Board of Medical Practice. The organizations take a strong stance that lawmakers should not establish standards of care.
Harrington did say, however, that more research and education is necessary for better understanding and treating this complicated disease.
“I think there’s an appropriate rule for our congressional delegation in encouraging the National Institutes of Health and the CDC to provide better information,” he said.
Until then, Chen said, his department must to do a better job of outreach.
“We have a big problem with Lyme disease in Vermont,” he said. “My goal is to educate the public about how to recognize and prevent it and educate the physicians about how to treat it and diagnose it, and then to keep my eye on how things are changing.”
