Insurers required to cover long term treatment of Lyme disease

Lauryn Russell is a 13-year-old student from Mercer County in northwestern Illinois who has faced a medical challenge made even more difficult by the laws of her home state. When she was 7 years old, Lauryn contracted Lyme disease, a tick-borne illness that is characterized by headaches, fevers, rashes, joint pain and fatigue. The federal Centers for Disease Control and Prevention reports about 30,000 Lyme disease cases in the United States each year, but also says that reported cases are likely only a fraction of the true number of cases, which could be as high as 300,000.

Lyme disease is usually treated with a brief period of antibiotics. Lauryn’s illness was not correctly diagnosed for quite some time. She contracted what is known as persistent Lyme disease, or post-treatment Lyme disease syndrome, a condition in which the symptoms of the disease continue after the normal course of treatment has ended.

Rep. Dan Swanson worked with then 13-year-old Lauryn Russell on
legislation to combat Lyme disease
In September 2017, Lauryn and her mother, Jennifer, met with State Representative Dan Swanson (R-Alpha) to seek assistance.

Jennifer and Lauryn said ‘we need help. We’re not being treated as we feel we should be from our medical care,’” Swanson recounted to WOC radio earlier this year. He said doctors in Illinois were reluctant to treat the disease because of how easily misdiagnosed it is. He also said they were only willing to follow the CDC protocols of antibiotic treatment of up to 21 days. Swanson said fears of punitive action by the Illinois Department of Financial and Professional Regulation were holding the doctors back from going beyond the CDC protocols to treat Lauryn. Advocates for Lyme disease sufferers have long claimed that the CDC protocols are not sufficient for patients with more persistent cases of Lyme disease.

“Lyme disease has a 28-day course,” Swanson said. “So since we’re treating it with 21 days of antibiotics when it’s first diagnosed, it’s like giving someone two days of medicine for a three day flu. It would just fall short.”

So Swanson took action. In February 2018, he introduced House Bill 4515, the Lauryn Russell Lyme Disease Prevention and Protection Law, which allowed Illinois doctors to go beyond CDC protocols when treating especially persistent cases of Lyme disease; like the one Lauryn had; without facing punishment from state regulators. It also created task forces to study the disease and provide educational resources to health care providers about its symptoms and treatments. The bill passed both houses and then-Governor Bruce Rauner’s amendatory veto was overridden in November to make the bill become law.

But neither Swanson nor the Russells were satisfied just yet. There was still work to be done on the issue of proper treatment of Illinoisans with Lyme disease.

“Last year’s legislation was giving doctors the ability to treat Lyme disease above and beyond CDC protocols and also to establish a task force to help educate doctors to develop training packets,” Swanson said. “This year, our push is to get people with Lyme disease insurance coverage.”

“We found once they were diagnosed with Lyme, many of the private-pay insurances were no longer paying,” Swanson said.

This year, Swanson introduced legislation to amend the Illinois Insurance Code to require insurance policies “to provide coverage for long-term antibiotic therapy for a person with a tick-borne disease,” like Lyme disease.

House Bill 889 quickly accumulated a bipartisan group of co-sponsors, and cleared committee.

“The ability to receive treatment when you have previously been insufficiently treated is life changing,” Swanson said. “This session we pushed another piece of the puzzle into place by mandating private paying insurance coverage of the long-term antibiotic treatment needed for some patients.”

In late March the bill passed the House, but not without a fight.

“This bipartisan bill was opposed by many insurers and their very effective lobbyists,” Swanson said after House passage. “These are powerful and entrenched interests who wanted to shut down this effort simply due to cost. However, the compelling testimony of Lyme sufferers and doctors making a difference in this field helped sway my colleagues toward an overwhelming, unanimous vote to pass this bill out of the House. I couldn’t be prouder of the team that worked so well together on behalf of tick-borne disease patients.”

Senator Neil Anderson (R-Moline) sponsored the bill in the Senate, where it passed 58-0. It is awaiting the signature of Governor J.B. Pritzker in order to become law on January 1.