Insurance companies and patient advocates are battling it out on Beacon Hill over a controversial Lyme disease bill that would mandate long-term insurance coverage for patients who say their bodies are racked with the chronic effects of a disease that plagues thousands of Bay Staters each year.
“We’ve got people remortgaging their homes. They’re too sick to work,” said Trish McCleary, 50, a Lyme disease patient advocate and former member of the Massachusetts Lyme Commission. The new legislation is “going to put people back to work. It’s going to save lives.”
The bill, “An Act Relative to Lyme Disease Treatment Coverage” — filed both in the House and Senate — would lengthen mandatory coverage from two-four weeks of antibiotics to treatment regimens of any duration as long as they are deemed necessary by a doctor.
The legislation is sponsored by Rep. David Linsky and Sen. Anne Gobi, with 140 co-sponsors, and is slated for a final decision in the next week.
Massachusetts had the second-highest incidence of Lyme disease in the country in 2014 with 5,304 cases, according to the Centers for Disease Control and Prevention.
The medical community has long been split on the duration of Lyme disease — a tick-borne illness that can cause a bull’s-eye rash, fever and aches. Patients such as McCleary say the symptoms can linger and worsen, causing joint pain, debilitating fatigue and even paralysis.
There is no definitive way to test for chronic Lyme disease, and many patients say they have been misdiagnosed with other illnesses, including multiple sclerosis and ALS.
McCleary had to use her children’s college funds to pay for treatment.
“I was becoming wheelchair-bound and very unwell,” said McCleary, who said she contracted the illness as a teenager and has experienced worsening symptoms on and off ever since. “I woke up and was paralyzed and couldn’t speak. It was a long road back.”
But the bill is not backed by medical research, and could cause premiums to skyrocket, said Eric Linzer of Massachusetts Association of Health Plans.
“When you take into account the number of mandates the state has on the books and continue to add to them,” Linzer said, “it adds to the cost that employers and consumers have to pay for health care coverage.”