DIAGNOSED WITH LYME DISEASE in 2006, Trish McCleary of Sturbridge spent a month on antibiotics that did little to relieve symptoms that left her partially paralyzed and unable to speak. Her doctor prescribed more antibiotics, but her insurance company refused to pay, citing the prevailing medical wisdom that the drugs weren’t necessary and could be harmful.
McCleary ended up spending more than $100,000 of her own money for treatment. When her money ran out, her symptoms returned. Now she is pushing for legislation that would require insurers to pick up the tab for long-term antibiotics to treat the disease. “Thousands of people need…and are waiting for this bill,” she says.
 |
McCleary sits on a state commission that is preparing to recommend that insurers be required to cover long-term antibiotic treatment for Lyme disease. A draft report prepared by the commission recommends changing state law to mandate the coverage. The final report was scheduled to be unveiled in October, but the arrival of Hurricane Sandy postponed the release. At press time, the final report had not yet surfaced, raising concerns among some commission members about back-channel efforts to delay or alter the report. The commission’s chairman, state Rep. David Linsky of Natick, says he expects the report to come out in early 2013 without major changes. Soon after, he plans to file a bill mandating the insurance coverage.
[In early January, Interim Public Health Commissioner Lauren Smith wrote to Linsky that her department would not back recommendations in the Lyme Commission’s Report that “lack scientific basis…specifically policy recommendations regarding…the efficacy of long-term antibiotics as a treatment therapy.” Two DPH officials were involved in drafting and approving the commission report last year.]
Doctors have quarreled for decades over how to diagnose and treat Lyme, and even whether it exists as a chronic illness. The prevailing medical protocol developed by the Infectious Disease Society of America limits the use of antibiotics to 28 days, as there is usually no evidence the Lyme bacterium is present after that duration of treatment. According to Diana Olson, a spokesperson for the group, extending the use of antibiotics is dangerous. “This is a patient safety issue,” she says.
In addition to the potential side-effects, long-term antibiotic use creates opportunities for drug-resistant bugs to develop. “We are hearing about antibiotics being used months, even years, beyond recommended levels,” says Olson. “That’s bad medicine.”
But other doctors argue that Lyme often eludes blood tests as well as the initial regimen of antibiotics. If treatment is not continued in such cases, they say, the spiral-tailed bacterium burrows deeper into a variety of organ tissues, causing crippling pain and fatigue as well as cognitive and cardiac problems.
According to Dr. Leo Shea, the benefits of controlling these chronic symptoms with extended treatment far outweigh the risks of long-term antibiotics. Shea heads the International Lyme and Associated Diseases Society, a group that has long protested the existing treatment protocol for Lyme as too rigid. Shea’s organization has developed its own Lyme antibiotics guidelines, which are ignored by most practitioners.
Olson, who calls Shea’s organization “almost a fringe group,” says many patients seeking long-term antibiotics treatments have no more aches and pains than the average “healthy” person. Others may be misdiagnosed and suffering from some other illness, physical or psychological, she says.
To avoid such problems, Olson’s organization recommends doctors rely on both clinical signs and blood tests when diagnosing Lyme. Blood tests are quite accurate if someone has been sick for longer than six weeks, she says. But Shea contends available tests are consistently unreliable. Physicians must rely on patient symptoms to diagnose and decide whether or not to continue treatment, he says.
Only research will settle the scientific debate between these two groups, says Dr. Sam Donta, an infectious disease expert and Massachusetts commission member. “Until we know more,” he says, “we can’t be dismissive of one idea or another.”
Donta hopes the report will make doctors aware of alternative options. “What you’ve been told about Lyme disease is not what you need to know,” he says. “There are other potential treatments that help patients.”
Physicians report 2,000 to 4,000 cases of Lyme disease each year in Massachusetts, but state health officials estimate the actual number is probably five to 10 times higher as symptoms are often misdiagnosed.
Thanks to a law signed by Gov. Deval Patrick last year, doctors in Massachusetts have the right to treat Lyme disease as they see fit. But insurers are not obliged to cover more than the initial month-long course of antibiotics. Patients who want to extend their antibiotic treatment must pay out-of-pocket for the medication. The commission estimates the bills add up to millions of dollars for families across the state.
While controversial, a proposal requiring insurers to cover long-term antibiotic treatment for Lyme disease is not without precedent. Rhode Island passed a similar law in 2004.
McCleary says it’s time for Massachusetts to act. “I will continue to fight for people too sick to speak up to get the meds they need,” she says. She admits long-term antibiotics do not cure lingering symptoms of Lyme disease, but says the drugs allow patients to maintain a new normal. “For now, that’s all we’ve got,” she says.
Linda Enerson is a freelance writer in based in Orange.