HARRISBURG, Pa. (WHTM) – A rally was held on the steps of the Capitol Tuesday where attendees asked for fair insurance coverage of Lyme disease treatments.

“There is such a thing as chronic Lyme disease,” Sen. Stewart J. Greenleaf (R-Montgomery/Bucks) said.

“We’ve been struggling for years to get well,” said Nika Corwin.

Corwin and her children have Lyme disease and serious co-infections caused by the disease.

“It is such a misunderstood disease,” she said. “Lyme patients are suffering and we don’t have many treatment options.”

Right now, the Centers For Disease Control recommends 30 days of antibiotics. Insurance companies are not required to cover the cost of treatment after that and often considers the treatments experimental.

According to the Pennsylvania Lyme Resource Network, 40 to 50 percent of Lyme cases do not respond to short-term antibiotics, which leads to a lot of out-of-pocket expenses.

“Unfortunately, tens of thousands of dollars out-of-pocket,” said Susan Pogorzelski, another Lyme patient.

“The disease itself is so overwhelming and then when you add the financial burden and the lack of support from the medical community, it just exacerbates everything,” Corwin said.

Senate Bill 100, sponsored by Greenleaf, would require insurance companies to cover longer term antibiotic treatments, closing the insurance gap and giving families some financial relief.

“Some people lose their houses, some people lose their livelihoods, their jobs. Our whole lives are basically upended by this disease and it doesn’t have to be that way,” Pogorzelski said.

In a memo to legislators, the Insurance Federation of Pennsylvania said: “We respect the challenges faced by those suffering from Lyme disease, but whether long-term antibiotic therapy is appropriate isn’t a question for either the General Assembly or insurance companies. It is a question for the medical research community, and it should be answered (and covered) only based upon rigorous examination and evidence from that community.”

Senate Bill 100 is currently in the Banking and Insurance Committee. There is no vote scheduled at this time.Get breaking news, weather and traffic on the go. Download our News App and our Weather App for your phone and tablet.