In the Journals

PTLDS costs estimated at $1 billion annually in US

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February 6, 2015

Researchers from Johns Hopkins University reported that the long-term consequences of Lyme disease infection is having a significant impact on the United States health care system — costing upwards of $1.3 billion annually, or almost $3,000 a patient on average.

“Routine follow up of patients after initial treatment of Lyme disease may be important to identify those who go on to develop post-treatment Lyme symptoms,” John Aucott, MD, assistant professor of rheumatology at Johns Hopkins University School of Medicine, told Infectious Disease News. “Symptoms of unusual fatigue, new musculoskeletal symptoms, or other unexplained symptoms in a patient recently treated for Lyme disease should raise the question of possible Post-Treatment Lyme Disease Syndrome.”

John Aucott

Post-Treatment Lyme Disease Syndrome, or PTLDS, continues to be a controversial topic. Some physicians and patient advocacy groups claim that PTLDS is a chronic condition lasting weeks, months or even years after initial antibiotic treatment has been dispensed, calling it “chronic Lyme disease.” Others argue that there is insufficient evidence of the persistence of viable Borrelia burgdorferi bacteria in PTLDS, and that long-term symptoms like fatigue, musculoskeletal pain and neurological manifestations are unrelated to the infection.

According to the CDC, 10% to 20% of patients treated for Lyme disease with the recommended 2- to 4-week course of antibiotics have PTLDS. After initial antibiotic therapy, there are limited treatment options for patients reporting persistent symptoms of Lyme disease.

“Our study looks at the actual costs of treating patients in the year following their Lyme diagnosis,” Emily R. Adrion, MSc, a PhD candidate in the department of health policy and management at Johns Hopkins Bloomberg School of Public Health, said in a press release. “Regardless of what you call it, our data show that many people who have been diagnosed with Lyme disease are in fact going back to the doctor complaining of persistent symptoms, getting multiple tests and being retreated. They cost the health care system about $1 billion a year and it is clear that we need effective, cost-effective and compassionate management of these patients to improve their outcomes even if we don’t know what to call the disease.”

Aucott, Adrion and colleagues conducted a retrospective analysis of medical claims data from patients aged 0 to 64 years who were enrolled in commercial health insurance plans in the U.S. between 2006 and 2010. The study compared 52,795 patients treated for Lyme disease with 263,975 matched controls with no evidence of disease exposure.

Lyme disease was associated with $2,968 higher total health care costs (95% CI, $2,807-$3,128). Lyme disease patients also had 87% more outpatient visits in the span of 1 year (95% CI, 86%-89%), and 71% higher ED visits (95% CI, 68%-76%).

According to the researchers, patients with Lyme disease were almost five times more likely than controls to have one or more PTLDS-related diagnoses (adjusted OR = 4.77; 95% CI, 4.67-4.87). They also were more likely to experience debility and undue fatigue (aOR = 5.47; 95% CI, 5.35-5.6), peripheral neuropathy (aOR = 2.65; 95% CI, 2.57-2.74) and arthropathy (aOR = 4.51; 95% CI, 4.32-4.7). Additionally, having one or more PTLDS-related diagnoses was associated with $3,798 higher total health care costs than not having the disease (95% CI, $3,542-$4,055).

According to Aucott, the debate surrounding Lyme disease is not helping patients.

“These patients are lost,” he said in the release. “No one really knows what to do with them. It’s a challenge, but the first thing we need to do is recognize this is a problem. There’s not a magic pill. These patients already got the magic pill and it didn’t work.” – by John Schoen

Disclosure: Aucott is a board member of the Lyme Disease Research Foundation, which provided a grant to complete the study. The researchers report that the foundation was not involved in the design or conduct of the study, the statistical analysis or in any publication decisions.