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Reports of Lyme disease have more than doubled over the past two decades. Patients contend that insurance companies sometimes won’t pay for long-term treatment, while some doctors say that it isn’t necessary.
Ticks are sometimes hard to see with the naked eye. They’re tiny creatures and can be as small as a pinhead. But while these bloodsuckers may be little, the impact they’re having on humans is immense. Lyme disease and other tick-borne illnesses are on the rise in the U.S., with the rate of infection increasing every year.
Lyme disease was first discovered in 1975, and since that point the “Lyme Wars” have raged in the scientific community over symptoms and treatments. There is a strong medical consensus about the usual course of treatment for an early diagnosed case of Lyme, which is typically two to four weeks of antibiotics, although some patients say they end up needing more drugs over longer periods to kick symptoms like fatigue, aching joints, and cognitive impairment.
The controversy is usually centered on what is sometimes called chronic Lyme disease, in which people are plagued by debilitating symptoms for years or involve patients who developed symptoms long after they believe they were bitten by an infected tick. Others, however, raise doubts about chronic Lyme, saying some of the diagnosed patients don’t actually test positive for the disease and likely have another condition.
In recent years, the debate has entered statehouses, where more and more have considered legislation to require insurance companies to cover long-term Lyme disease treatments, such as courses of intravenous antibiotics. Illinois, Massachusetts, Rhode Island, Connecticut and West Virginia all have statutes mandating insurance companies provide longer Lyme coverage; at least four other states have introduced such bills and failed to pass them.
In Massachusetts, legislators in 2016 voted to override Gov. Charlie Baker’s veto of a bill to require long-term insurance coverage of Lyme treatments. Insurance companies and medical groups fought the law, in part arguing that antibiotics taken over long periods of time could be dangerous for patients and contribute to the drugs becoming less effective.
Now advocates are pushing the issue in Pennsylvania, the state with the highest number of confirmed Lyme cases in 2017. In April, the state House approved a bill similar to the Massachusetts law to require longer Lyme disease coverage, as well as short-term treatment. Lyme patient advocates held a rally this week to encourage the Senate’s banking and insurance committee to refer the bill to the floor for a vote.
“Lyme has been misunderstood for a long time,” said Julia Wagner, president of the Pennsylvania Lyme Resource Network, which is leading the lobbying effort. “Doctors get very short guidelines from medical associations, and so they don’t know how to recognize it.”
Wagner said that insurance companies often use research that supports treating Lyme with two to four weeks of antibiotics to build their standard of coverage. But that, she said, assumes that people get the short-term treatment within the short window in which it would be most effective.
“If you’re lucky, you get flu-like symptoms immediately, and you think about being outdoors, and the possibility that you could have encountered a tick,” she said. “A doctor would recognize a flu in the summer is unusual, and get you started early on antibiotics, which could eradicate it before it can progress.”
Advocates for requiring coverage of more extensive Lyme treatment say that too many in the medical community lack broad awareness about the symptoms of the disease. While many associate Lyme with a distinctive bullseye rash on the skin, experts say it doesn’t always appear. Similar to syphilis, Lyme disease left untreated can affect the entire body, causing joints to ache, damaging the nervous system, degenerating the brain, inflaming the spinal cord, and forcing the heart into an irregular pattern, among other symptoms.
Wagner said she got a personal education in the variety and severity of Lyme disease symptoms when she and her children became ill after moving to the suburbs of Philadelphia in 2004. Within nine months of being infected, she had gone from being the CEO of a consulting firm to not being able to string a sentence together. “It was difficult to get a diagnosis because my symptoms were so widespread,” she said. “But not many diseases are multi-system, so my physician should have known.”
Wagner says her son ended up bedridden with Lyme that relapsed five years after he was initially treated for the disease. He was plagued by nerve degeneration in his legs and brain inflammation for more than a year. “The disease is so complex that its difficult to solve for every person with the same treatment,” she said.
Aetna of Pennsylvania, in their Lyme treatment policy, approves short-term antibiotics if patients meet certain criteria, but notes that the company considers “additional antibiotic therapy in post-treatment, persistently fatigued patients (post-Lyme disease syndrome) experimental and investigational because intravenous antibiotic therapy has not been shown to be effective for this indication.” Blue Cross of Pennsylvania did not respond to requests for comment.
Dr. Phillip Baker, executive director of the American Lyme Disease Foundation, is skeptical of the effectiveness of long-term treatments. “Generally, if there is a therapeutic approach that’s been shown unequivocally to be effective and safe, insurance companies will pay for it,” he said. “That’s not the case for long-term Lyme treatment.”
Some doctors, including Baker, say that people who have chronic problems might have been wrongly diagnosed with Lyme disease. “I have no doubt the symptoms are real,” he said. “But there are around 265 conditions that have symptoms similar to Lyme. You can’t go off symptoms alone, and without an objective laboratory test confirming Lyme, you probably have something else that needs to be treated properly.”
Baker worries in particular about one provision in the proposed Pennsylvania law that would protect self-described “Lyme literate” doctors who prescribe longer antibiotic treatment protocols from reprimands by medical boards or insurance companies. “Doctors could potentially abuse this law, forcing patients to spend $50,000 to $70,000 to get treated for a disease they don’t have,” he said. “This would tie the hands of the authorities to review physicians for potential abuse.”
Baker pointed to reports of patients spending years and thousands of dollars on experimental treatments like injections of garlic to cure their ailments, something he worries could become more widespread if states like Pennsylvania require insurers to cover long-term treatment.
Wagner counters that antibiotics aren’t experimental. “Patients are angry that a basic medication already being used long-term for things like acne isn’t being approved by insurance companies when it could be a life-saving measure,” she said.
Emma Coleman is the assistant editor of Route Fifty.