Fighting chronic Lyme disease, healthcare policies in Indiana

Editor's Note: The following is part of a class project originally initiated in the classroom of Ball State University professor Adam Kuban in fall 2021. Kuban continued the project this spring semester, challenging his students to find sustainability efforts in the Muncie area and pitch their ideas to Deanna Watson, editor of The Star Press, Journal & Courier and Pal-Item. Several such stories are being featured this spring.

MUNCIE, Ind. − Chronic Lyme disease patients in the state of Indiana and all over the United States have been struggling to find affordable treatment due to the disease itself not being covered by insurance past the 30-day treatment that is provided.

According to the Centers for Disease Control and Prevention, Lyme disease is transmitted to humans through being bit by infected blacklegged ticks. Patients who experience symptoms of pain, fatigue or difficulty thinking more than six months after they finish treatment have a condition called Post-Treatment Lyme Disease Syndrome, also known as chronic Lyme disease.

Most cases of Lyme disease can be treated successfully with a two-to-four-week course of antibiotics. According to an article by Medical Bill Gurus, insurance companies are not required to cover treatment per the Infectious Disease Society of America guidelines. Therefore, insurance companies do not recognize chronic Lyme disease and use these guidelines to deny coverage for long-term treatment.

A majority of all Lyme Literate Medical Doctors are not in-network with any major insurance companies, and this leaves those patients who still experience symptoms after the provided few weeks of antibiotics with slim options.

Lyme disease patients who continue to have symptoms after that four-week mark may not be able to get the treatment they need due to the lack of financial help. According to a 2022 study by Samantha S. Ficon published in “Nursing Continuing Professional Development”, the disease can be harmful and deadly if it is not treated effectively early on, and 10% to 20% of patients previously treated for Lyme disease still experience symptoms for more than six months after finishing antibiotic treatment.

Kimberly Sharp, director of pain management for Community Health Network, has worked in the field of chronic pain management for over 20 years.

“There is currently no evidence supporting the long-term use of antibiotics, and the CDC does not officially recognize chronic Lyme. There are limited dollars for care, so insurance companies must draw the line somewhere on what is covered,” Sharp said.

Many insurance companies are not covering what chronic Lyme patients need.

Riley Sims, senior art major, working on her schoolwork in the L.A. Pittenger Student Center at Ball State University. According to Tick Check, there were 2,013 cases of Lyme disease confirmed in the state of Indiana from 2000 to 2020.

Riley Sims, senior at Ball State University, was diagnosed with Lyme disease in May 2020 and struggles with the chronic illness daily. She said she has to work twice as hard to keep up with her schoolwork and day-to-day tasks, and she has no choice but to seek treatment. Sims looks to her mother and father for financial help in order to cover her chronic Lyme expenses. Due to being a busy college student, she does not have enough money at this point in time to cover the costs of treatment and appointments.

[Insert photo of Riley Sims in front of Beneficence]

“I take supplements for my chronic Lyme disease that are suggested by my doctor, and I also have to get many blood tests, but none of it is covered by insurance, not even my doctor appointments,” Sims said.

According to Global Lyme Alliance, patients can suffer for years not only from the symptoms of chronic Lyme, but from the financial impact as well. Patients end up paying out-of-pocket costs and hope for reimbursement. This leaves patients who become too sick to work with large financial struggles.

Mitchell Goldman, MD, senior associate dean for Graduate Medical Education and professor of medicine for the Department of Medicine/Infectious Diseases at the University of Missouri School of Medicine, previously worked at the Indiana University Medical Center and has experience with Lyme disease patients.

“Insurance companies often require an approval process to provide therapies beyond usual guidelines, and this requires a physician or other provider to plead the case to the insurance company that may accept or deny a therapy beyond usual time,” Goldman said.

According to the Centers for Disease Control and Prevention, there were 34,945 reported cases of Lyme disease in the United States in 2019. Compared to other tickborne illnesses, this number is high. There were 5,655 Anaplasmosis cases, 5,207 Spotted Fever Rickettsiosis cases, 2,420 Babesiosis cases and 2,093 cases of Ehrlichia chaffeensis ehrlichiosis. Many patients suffer daily from chronic Lyme disease with no help from their insurance providers, and some of them may even be forced to quit treatment due to financial challenges.

[Insert picture of Riley Sims working on schoolwork]

Sims said the Lyme Treatment Foundation has helped her tremendously and that other patients seeking financial help should look more into other non-profit organizations like this.

“Lyme disease is like a rollercoaster. I just wish we had more help riding it,” Sims said.

This article originally appeared on Muncie Star Press: Fighting chronic Lyme disease, healthcare policies in Indiana