Legislation aims to ease financial burden for Lyme disease patients

PALMYRA, Pa. (WHTM) – The Hoffer family from Lebanon County is starting a new chapter.

“We are moving out of our home that we have lived in for ten years. It is emotional, but I am just trying to keep myself together,” Sheila Hoffer, a Palmyra resident, said.

The family doesn’t want to move out of their home, but they have to.

“This has depleted everything we had in savings,” Sheila said.

Sheila was diagnosed with Lyme disease two years ago.

“It was late stage and my body was shutting down,” she said.

One month later, the family received more bad news.

“We did some research and found that you can pass it to children in utero,” Sheila said. “We tested the children and all four tested positive, along with very serious co-infections.”

Sheila had to stop working to take care of herself and her four sons. Her 13-year-old son, Zerek, gets IV treatments at home.

“At first we were doing it at a clinic where we would pay out of pocket because we couldn’t get it covered by insurance,” Sheila said.

The IV treatments were only covered by the Hoffer’s health insurance after Zerek was diagnosed with a co-infection caused by Lyme disease. Right now, the Centers for Disease Control and Prevention recommends 30 days of antibiotics to treat Lyme disease, anything beyond that, insurance companies are not required to cover the cost.

“After a certain time our insurance would stop paying and we would have to fight them,” Sheila said.

Even though her husband is still working, it wasn’t enough to keep up with the out of pocket expenses for specialists and denied insurance claims.

Sheila says over the past two years they’ve spent “well over $100,000.”

“The financial burden is very prevalent,” Eric Huck, co-founder of the Pennsylvania Lyme Resource Network, said.

The Pennsylvania Lyme Resource Network advocates for Lyme disease patients by providing resources and support groups across the state. According to a LymeDisease.org patient survey, 42 percent of patients with chronic Lyme disease report either having to quit or cut back on work.

“It is a battle,” Huck said. “These families have to fight their doctors and their insurance companies.”

There is a bill at the Capitol that could change that.

“We have to really treat this as an epidemic,” Sen. Stewart J. Greenleaf (R-Montgomery) said.

Sen. Greenleaf introduced Senate Bill 100, which would allow doctors to treat patients with antibiotics beyond the CDC’s recommendation of 30 days and require insurance companies to cover the costs.

“This legislation will at least give them some coverage for the major treatments which are antibiotics,” Sen. Greenleaf said.

Not everyone is on board with the legislation.

“Insurance companies are fighting back saying, ‘well that’s going to be a financial burden on them,’” Huck said.

Legislation, like Senate Bill 100, has already been introduced and passed in states like Connecticut, Rhode Island and Massachusetts. Huck says the impact on the insurance industry there has been minimal.

“Thirteen cents per year, per patient, for long term treatment of prescription antibiotics. That’s my understanding,” Huck said.

Back at the Hoffer’s house the boxes are starting to fill up as they decide what to keep and what to give away. The family will be moving into a smaller house with a mortgage they can afford.

“This was our dream home,” Sheila said.

Although the financial relief didn’t come soon enough for the Hoffer family, they are happy to hear there is a fight brewing at the Capitol.

“I am so thankful to the people that are working hard and advocating for families like us,” Sheila said.

Senate Bill 100 is currently in the Banking and Insurance Committee. There is no vote scheduled at this time.

Advocates for the bill are holding a rally in the Capitol Rotunda on May 9 from 11:00 a.m. to 1:00 p.m.

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