Why are doctors reluctant to treat Lyme disease?

It can be extremely challenging for patients to locate a physician who is trained in treating Lyme disease or even, willing to treat the illness. So, why all the reluctance by clinicians?

Findings from a study by Johnson and Maloney, “Access to Care in Lyme Disease: Clinician Barriers to Providing Care,” provide some insight into why clinicians may be hesitant in treating Lyme disease.¹

“The primary goal of this study was to identify the challenges faced by clinicians who provide care for patients with PLD/CLD,” the authors wrote. And, in so doing, may identify potential solutions that assist with recruiting and retaining more clinicians in treating Lyme disease.

The authors surveyed 155 clinicians from 30 states in the U.S. who treat patients with post-Lyme disease/Chronic Lyme disease (PLD/CLD).

Clinicians reported that the barriers to providing care included: complexity of care (79%), cognitive impairment of patients (57%), and frequent calls from these patients between their scheduled appointments (49%).

The authors included comments by clinicians which addressed several of these issues.

Complexity of Care

“Lyme disease is the hardest diagnosis I treat as each patient responds so differently to therapy, it is hard to know where to start with each one, what will work, what will make them worse, etc. Some just never seem to get better no matter what I do. It is gratifying to see others improve.”

“I think the most difficult problem is the cost of providing this amount of complex care on a cash basis. To really review hundreds of records, spend time with the patient and do a proper workup, takes hours. I’d like to see more support for patients and clinicians who chose to help this set of patients.”

Exclusion from Insurance Networks

“I knew that at some point I would be forced to stop taking insurance and move forward on a cash pay only basis. Looking at the numbers, taking commercial insurance for these patients just doesn’t make any sense. I believe the main issue that causes many of these patients to be without access to care is the amount they need to spend on their practitioners plus the out-of-pocket cost for out of network testing, labs and treatment. For most of these patients that it is anywhere from $10 to $20K per year. It is a heavy burden”

Stigmatized or Disrespected by Colleagues

“Three-quarters of respondents report having been stigmatized or treated disrespectfully by professional colleagues because they treat Lyme disease,” wrote the authors.

3 out of 4 doctors treating patients with post-Lyme disease/chronic Lyme disease report being stigmatized or treated disrespectfully by colleagues.

This was demonstrated in several ways: 1) lack of professional support from colleagues, 2) opposition to treatment of PLD/CLD from some physician organizations, 3) limited ability to share office and practice burdens with colleagues and 4) being excluded from participating in insurance networks.

“While my patients are generally very supportive, some of my colleagues have stopped speaking to me and I worry about the medico-legal repercussions of what I do.”

Physicians Reprimanded by Regulatory Organizations

“Nearly 4 in 10 physicians (39%) reported having been reported to a medical board, an insurer, or subjected to a hospital-based quality improvement inquiry,” wrote the authors.

With the number of cases of Lyme disease growing, the demand for doctors treating post-Lyme disease/Chronic Lyme disease will continue to increase. In an effort to recruit and retain clinicians willing to treat Lyme disease patients, the authors suggest:

1. Improving clinician education regarding PLD/CLD to emphasize the uncertainty that exists regarding its pathogenesis, diagnosis and treatment along with the existence of divergent approaches to care.
2. Setting a more professional tone towards treating clinicians to reduce stigma, marginalization, and regulatory burdens.
3. Promoting innovative insurance reimbursement models that account for the complexity of care and time commitment necessary to provide care.