Some Lyme Disease patients having trouble getting treatment covered

It's a treatment for Lyme disease that was not covered by health insurance, then a Massachusetts law was supposed to change that.

Patients and doctors tell 25 Investigates that Blue Cross Blue Shield of Massachusetts is sometimes denying a specific treatment for Lyme disease: long-term antibiotic therapy.

The insurance company says they're just following the rules, but the people who wrote the law say they're not.

We spoke with a Massachusetts woman who doesn't want to share her identity because she's currently going through treatment for Lyme disease and doesn't want to jeopardize her coverage.

She says when she was prescribed oral antibiotics, they didn't work. Then she went to a Lyme doctor who prescribed her intravenous antibiotics that would last months.  She says her insurance company, Blue Cross Blue Shield of Massachusetts, spent months denying her prescription.

"Doctors should be able to diagnose you, not insurance companies," she said.

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State Representative David Linsky of Natick sponsored a law that specifically would protect patients seeking this type of treatment.

"It's very few people, but for those people they are real people with real families," said Linsky.

Before the law passed in 2016, insurance companies would only cover up to 28 days of antibiotics for Lyme disease.

There are two guidelines on how to treat Lyme disease recognized by the state of Massachusetts.

The International Lyme and Associated Diseases Society (ILADS) believes long term antibiotic therapy is determined by clinical judgement and patient response to treatment.

The Infectious Disease Society of America (IDSA) believes it puts patients at risk and promotes drug-resistant infections like superbugs.

Blue Cross Blue Shield says it referenced IDSA and a number of other agencies’ policies in order to come up with their policy, which they say follows the letter of the law.

In a statement to 25 Investigates, Blue Cross Blue Shield of Massachusetts says, "The IDSA guidelines are listed in our references that were researched in the process of creating the policy, along with approximately 20 other references, including the CDC, American College of Rheumatology, Council of Infectious Diseases Society of America, National Institute of Health Care Excellence, American Academy of Neurology, Institute of Medicine and more."  The statement goes on to say, "The BCBSMA policy itself adheres to the letter of the law, which actually contradicts IDSA guidelines."

Dr. Sheila Statlender is a clinical psychologist who provides counseling for people with Lyme. Three of her children were diagnosed with Lyme and says long-term antibiotic therapy helped them get better. Statlender was an advocate for the Lyme law and has been helping some doctors and patients navigate the appeal process.

"I've gotten many calls from both patients and from physicians who are saying 'why are we having so much trouble? We thought we could get prescribed and we would be getting covered?'" she said.

The Massachusetts Office of Patient Protection says since the law took effect, there have been three state-level external appeals for denials of long-term antibiotic treatment for Lyme disease.

All were with Blue Cross Blue Shield of Massachusetts.

Attorney Joe Larisa was a leader in passing a similar Rhode Island law back in 2002 and helped draft the Massachusetts law.

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"Unfortunately, Blue Cross is pretending the law didn't pass in Massachusetts," said Larisa.

He says this all comes down to the term "medical necessity." The Massachusetts law states that medical necessity is determined by a "licensed physician after making a thorough evaluation of the patient's system."

Larisa points to language in Blue Cross Blue Shields medical policy for the Lyme law that he says allows them to deny patients their treatment.

"They say medical necessity in Massachusetts, Blue Cross determines, not the physician. Directly contrary to the language of the act," said Larisa.

Blue Cross Blue Shield of Massachusetts sent a statement to 25 Investigates that says:

The state law mandates coverage of long-term antibiotic therapy for periods in excess of four weeks, but does not restrict the right to review shorter courses of treatment. Our medical policy reflects Massachusetts law and states the following:

A licensed physician may prescribe, administer or dispense long-term antibiotic therapy for a therapeutic purpose to eliminate infection or to control a patient's symptoms upon making a clinical diagnosis that the patient has Lyme disease or displays symptoms consistent with a clinical diagnosis of Lyme disease, if such clinical diagnosis and treatment are documented in the patient's medical record by the prescribing licensed physician.

Long-term antibiotic therapy is defined as the administration of oral, intramuscular or intravenous antibiotics singly or in combination, for periods of time in excess of 4 weeks.

Patient privacy protections prohibit us from discussing specific cases without consent from the member. We take members' access to safe and effective medications and treatments very seriously and we review all cases carefully. If anyone believes that their treatment was not reviewed correctly, members have strong internal and external appeal rights.

--Katherine Dallow, MD, MPH; Vice President of Clinical Programs and Strategy; Blue Cross Blue Shield of Massachusetts

"The legislation is very, very clear, and Blue Cross Blue Shield needs to step up and do the right thing and cover this treatment," says Rep. Linsky.

He says if they don't, he's ready to bring new legislation to make sure they do.

"We certainly hope it doesn't get to that point," Linsky said.

Editor's Note: This version of the story has been updated to include a statement from Blue Cross Blue Shield of Massachusetts which references the agencies they say were consulted to come up with their policy.