Why Chronic Lyme Patients Can’t Get the Care They Need Survey of Lyme-treating doctors highlights barriers to providing treatment

By Lorraine Johnson, JD, MBA

P revious studies have shown that patients who have persistent or chronic Lyme disease (PLD/ CLD) have a hard time obtaining the medical care they need to get well (Johnson 2011). A new study has found that clinicians who treat this population face significant challenges in providing patients care that is local, timely, and affordable (Johnson 2022).

Between September 23 and December 1, 2021, LymeDisease.org conducted a survey of U.S. clinicians who treat PLD/CLD patients. One hundred and fifty-five clinicians from 30 states responded to the survey and 45 provided comments in the open text survey item. The results of this survey were published this week: Access to Care in Lyme Disease: Clinician Barriers to Providing Care. The primary goal of this survey was to identify the difficulties that clinicians face when caring for patients with PLD/CLD.

The CDC estimates that 476,000 cases of Lyme disease occur annually (Kugeler 2021). Even when diagnosed and treated early, up to 44% of patients fail treatment, with only 56% considered to have returned to health (Aucott 2022). In later disease, treatment failure rates are higher. Lyme disease patients who remain ill after antibiotic treatment are regarded as having persistent or chronic Lyme disease. These patients may have been diagnosed early or late.

How many Lyme disease patients in your care

Clinicians who treat PLD/CLD

Clinicians treating patients with PLD/CLD have developed significant clinical expertise. Most clinicians (55%) are medical doctors (MD) or doctors of osteopathy (DO); the remainder are naturopaths with prescription privileges (15%), nurse practitioners (12%) or physician assistants (6%).

Over half of the clinicians (56%) have treated more than 500 patients and 38% have treated more than 1000 patients. Most (57%) dedicate more than half of their practice treating Lyme disease. Almost all (98%) have taken continued medical education for Lyme disease treatment. Eighty-nine percent belong to the International Lyme and Associated Diseases Society (ILADS) and most belong to other medical societies as well.

How many Lyme disease patients in your care

Why Clinicians Who Treat Chronic Lyme Disease Find it Difficult to Provide Care

Despite their considerable expertise, clinicians report that providing care to PLD/CLD patients is challenging. In particular, the complexity of the care provided and the time it takes to provide that care make it difficult for clinicians to provide care using the traditional insurance-based healthcare model. This increases the cost of care provided to patients and makes it difficult for patients to pay for the care that can be given.

why treating Lyme disease is hard

The complexity of care needed requires longer clinician visits than treatment for other conditions. For example, 25% of clinicians said their first consultations took more than two hours, and 44% said their follow-up visits took between one and two hours.

Clinicians reported that the length of healthcare visits for PLD/CLD coupled with the additional insurance administrative burdens and reimbursement payment issues make it hard for care to be given under a traditional insurance-based model, which typically relies on clinicians seeing a high volume of patients for short office visits.

As one clinician explained:

“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 choose to help this set of patients.”

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