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Why isn’t chronic Lyme disease covered by health insurance?

The weather is warming across the country, which means that tick season is fast approaching. And with ticks comes the ever-growing threat of Lyme disease, a bacterial infection transmitted by ticks that causes flu-like symptoms such as chills, fever, swollen lymph nodes, headaches and joint pain. Even if you think you know all there is to know about this insidious illness, one fact may surprise you: most insurance companies will not pay for long-term Lyme treatment.

“There are countless people out there just like me who have been living with this disease for decades with no relief in sight,” says Terri Reagan, 55, a New Jersey resident who was first infected with Lyme disease 20 years ago after being bitten by a deer tick while walking her dog.

One woman: Health insurance didn't cover chronic Lyme treatment

In 1993, Reagan first came down with the flu-like symptoms that signify Lyme disease. She suspected that it was Lyme and was diagnosed by a doctor who immediately gave her a standard two-week regimen of oral antibiotics. Her symptoms dissipated, but not entirely, and she was “down and out” for nearly two months after being bitten.

lyme-disease-health-insuranceSince then Reagan’s life has been punctuated by long, arduous relapses, with symptoms including nausea, extreme fatigue, short-term memory loss, depression and debilitating joint pain, just to name a few.

“For the last two years in particular, I have had no quality of life,” Reagan says.

Last August, Reagan experienced her worst relapse ever. So she searched for a nearby physician who specializes in Lyme disease (often known as a “Lyme literate doctor”).

The doctor put Reagan on an aggressive IV antibiotic treatment schedule in November that should’ve lasted six months. But after just one month of treatment her health insurance provider, United Healthcare, stopped paying, informing her that further treatment was deemed experimental and would not be covered. For the next two months Reagan spent more than $6,000 out of pocket for her treatment, but eventually the money ran out. She had no option but to stop.

“The bottom line is if you suffer from chronic Lyme disease and don’t have the money for treatment, you’re screwed,” Reagan says.

The Lyme controversy

The heart of this issue stems from a debate about what exactly Lyme disease is. According to Patricia Smith, president of the nonprofit Lyme Disease Association Inc., the problem boils down to two schools of thought.

“According to the Infectious Disease Society of America (IDSA), the Centers for Disease Control (CDC) and most insurance companies, Lyme disease is hard to catch and easy to cure,” Smith says. “They believe that a few weeks of antibiotics are enough to cure the disease and that’s that.”

However, hundreds of Lyme disease sufferers and Lyme-literate physicians claim Lyme bacteria survive in the body long after treatment is completed. This results in what’s known as persistent Lyme disease, or Lyme disease treatment syndrome.

The IDSA doesn’t buy it. A review panel met in 2010 to examine 2006 IDSA guidelines for treatment of Lyme. The panel concluded that there’s no evidence for the existence of chronic Lyme disease and that long-term antibiotic treatment is “unproven and unwarranted.”

Why insurance won’t cover treatment

Most insurance companies base their coverage criteria on guidelines set forth by groups like the CDC and IDSA. That means if the CDC and IDSA don’t recognize chronic Lyme disease as a legitimate, long-term illness, neither does your health insurance provider.

Consider the case of Jim Kosal. Two years ago Kosal was misdiagnosed with ALS (a degenerative neurological disease that affects the spinal chord and nerve cells in the brain). By the time doctors figured out that he actually had Lyme disease, it was too late. The disease had progressed to a chronic stage, and his insurance provider wasn’t going to pay for treatment.

“First they said the therapy was ‘investigational,’” recalls Jim’s wife Erica. “Even after we demonstrated that it wasn’t, they questioned whether or not Jim even had Lyme, even though he had multiple diagnoses.”

The Kosals have spent more than $30,000 since Jim first became ill, and even after two rounds of appeals their insurance company doesn’t appear to be budging on reimbursement.

“(Insurers) think there’s a one-size-fits-all approach to treating Lyme,” says Jennifer Reid, co-chair of the Ridgefield Lyme Disease Task Force, a nonprofit educational and advocacy group based in Connecticut.

But, she adds, Lyme is a very complex disease, and a lot more research is required to understand it.

When it comes to Lyme disease, the language of most insurance policies is fairly straightforward. For instance, Aetna’s policy clearly states that it will pay for a four-week regimen of antibiotic treatment. However, Aetna considers additional antibiotic therapy for so-called chronic Lyme disease experimental and investigational, claiming that treatment for this condition has not been proven effective.

“Most people don’t read their policies, so it comes as a shock when they get sick (from Lyme disease),” Reid says. “I know people…who have lost their homes, their insurance, even their jobs. The potential for financial disaster is tremendous.”

Is change coming?

Make no mistake—Lyme disease isn’t going anywhere.

According to the CDC, this nasty and debilitating illness is America’s fastest-growing vector-borne disease (a disease carried by birds, animals or insects). In 2002, there were nearly 25,000 reported cases of Lyme disease nationwide. By 2011, that figure jumped to about 35,000 cases.

And yet the medical and insurance communities remain tight-lipped about the whole ordeal. Over the course of reporting on this story, all messages to health insurance representatives and doctors went unreturned.

“That’s because they’re afraid to talk about this too openly,” Smith says.

In recent years, state medical boards across the country have reprimanded dozens of Lyme-literate doctors for treating long-term Lyme patients with extended antibiotic regimens, sometimes going so far as to suspend their licenses. The claim is that these doctors are not following standard guidelines for Lyme treatment and are, in essence, being irresponsible practitioners of medicine.

This threat is so real and present that four states—Rhode Island, Connecticut, New Hampshire and Massachusetts—recently passed laws allowing doctors to prescribe long-term antibiotic treatment for Lyme patients without fear of losing their licenses or being dropped by certain health insurance providers.

“It’s all well and good that you can now get treated in Connecticut for chronic Lyme, but it doesn’t change the fact that insurance won’t pay for it,” Reid says. “And that has to change.”

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