Clinicians who treat chronic Lyme disease patients say that treatment is complex, time-consuming, and does not fit within the standard insurance-based model of providing care. They also report facing legal challenges as well as professional stigma from their medical peers.

A recently published study in Healthcare, Access to Care in Lyme Disease: Clinician Barriers to Providing Care, by Lorraine Johnson and Elizabeth Maloney, outlines these and other challenges that contribute to a shortage of clinicians at a time when cases are rising.

“Like long COVID, chronic Lyme disease requires complicated, time-intensive care that isn’t covered by insurance,” said Lorraine Johnson, CEO of LymeDisease.org.

“This, along with the risk of legal liability and professional stigma, has caused a shortage of clinicians who treat patients at a time when cases are rising. It’s become a real crisis.”

The study, which was conducted by LymeDisease.org, a research and advocacy organization, was based on a survey of 155 US clinicians from 30 states who treat patients with chronic Lyme disease.

Dramatic increase in Lyme disease cases

Lyme disease is caused by Borrelia burgdorferi and is primarily spread by blacklegged ticks. The Centers for Disease Control and Prevention estimates that about 500,000 people get Lyme disease in the United States each year, with cases growing dramatically over the past decade.

Chronic Lyme disease occurs when treatment is delayed, or when patients remain unwell after an initial course of antibiotics.

“Clinicians in our survey clearly recognize the dangers posed by inadequate medical education – too many patients go undiagnosed for far too long and too many clinicians are unduly criticized for providing the antibiotic therapies that many patients with persistent Lyme disease need,” said Dr. Maloney, President of Partnership for Tick-Borne Diseases Education.

The results of this study confirm previous studies on barriers to care that chronic Lyme disease patients face. Patients report long wait times, lack of insurance coverage, long travel distances and high out-of-pocket costs make care expensive and beyond the reach of many patients.

About LymeDisease.org

LymeDisease.org is one of the nation’s oldest Lyme disease advocacy organizations, as well as one of the community’s largest and most trusted communications networks. We bring to bear the collective power of tens of thousands of patients to improve patient care and accelerate Lyme disease research using science-based advocacy. We do this through our patient-led research project, MyLymeData, which allows patients to pool their data to accelerate research using real-world evidence.

About Partnership for Tick-Borne Diseases Education

Partnership for Tick-borne Diseases Education Ltd., a nonprofit organization dedicated to bringing reliable scientific and medical information to the attention of healthcare professionals, provides accredited online CME programs for healthcare professionals.

Additional Resources

Download the study.

Download a chartbook of the study results.

Enroll in MyLymeData.

For more information about findings from the registry, visit the MyLymeData Viz Blog.