Patients living with Lyme disease crowded the Statehouse on Wednesday to tell their stories about years of misdiagnosis and chronic pain.
The patients and their advocates want legislation to protect doctors if they prescribe long-term antibiotic treatment contrary to current medical standards.
Lawmakers also learned that Lyme disease is just one of several tick-borne infections now sweeping through Vermont.
Doctor Richard Horowitz practices in the Hudson Valley of New York, and has treated over 12,000 Lyme patients. He said his research found that Lyme is often accompanied with other infections.
"The people that come to me just don’t have Lyme. They have all these different infections that are in the ticks that have now gotten into them that suppress their immune system and make them much sicker," he said.
About 500 cases a year of Lyme disease are reported in Vermont. But Horowitz cited research that shows that 16 percent of dogs in the state have been exposed to Lyme. He said that’s a clear sign that the human infection rate is much higher than reported.
"This is an epidemic and the seriousness is not being recognized. You need to listen to these patients and their experience," he said.
And dozens of patients and their families jammed a joint meeting of the House and Senate Health Committees to offer compelling stories of their illness.
John Beattie from Salisbury told lawmakers that his wife suffered from debilitating Lyme disease for three and a half years.
"I’m happy to say despite the fact there was difficulty in initial diagnosis and treatment she is getting better," he said. "A lot of that time has been spent taking antibiotics from her physician, for whom I will be internally grateful."
If discovered early, a short course of common antibiotics will lead to a cure. But if the disease goes undetected, it’s much more difficult to treat in its later stages.
So patients and their advocates want insurance companies to be required to reimburse physicians for long-term treatment with antibiotics.
But that long-term drug regimen runs contrary to federal and state recommendations. Beattie said physicians need to be protected from disciplinary action if they prescribe long-term antibiotic care. He told lawmakers that doctors who challenge the conventional treatment methods face retribution from their peers.
"I know that there is a climate within the medical community in which disrespect among members of that medical community leaves patients suffering and untreated," he said.
Dr. Horowitz – the Lyme specialist from New York – said his treatment involves identifying and treating all the infections present in a patient. He said his method of care sometimes – but not always – requires long-term antibiotics.
State officials and some lawmakers say they don’t want to legislate a particular course of treatment or standard of care. Health Commissioner Harry Chen opposes the legislation, as does the state medical society.
But all sides agreed on the need for more education and research. Mike Fisher is chairman of the House Health Care Committee. He said he did not hear any evidence that patients are being denied the care they want.
"I do hear that there are people in the medical community who are not willing to provide it. And doctors need to be given the full range of options to make clinical decisions about the right way to treat any illness," he said.
But Fisher said it’s not his job as a politician to tell doctors how to treat a particular disease.