Cost Burden of Managing Duchenne Muscular Dystrophy and Disease Progression

Healthcare costs for patients with Duchenne muscular dystrophy (DMD) are already far higher than for individuals without the disease, and a new study has found that total healthcare costs are also higher for older patients with DMD.

DMD is a severe, progressive disease and the management of it is resource intensive and places a substantial burden on patients, families, and healthcare systems, according to the study in Journal of Managed Care & Specialty Pharmacy. With improved medical management and disease management, patients with DMD are living longer lives.

“Most children diagnosed today may live into their fourth decade with noninvasive ventilation and optimal cardiac management,” the authors wrote. “However, with improved survival there is also a longer lived burden of disease.”

The study analyzed DMD-associated resource utilization and costs in patients who were identified as having DMD and not just muscular dystrophy by using an algorithm that used diagnosis codes, pharmacy prescriptions, and procedure codes. The researchers matched DMD patients by age, gender, and region to controls without DMD in a 1:10 ratio.

They found that patients in the DMD cohort had healthcare costs that were roughly 10 times higher compared with the controls ($23,005 vs $2,277).

“We also found that medical need and health care resource utilization intensifies as DMD progresses, with a corresponding increase in costs, especially after age 14 years,” the authors wrote.

As patients with DMD aged they had a greater number of outpatient and office visits, since the progression of DMD results in loss of ambulation and increased respiratory difficulties.

According to the authors, the study provides a better understanding of utilization and spending for patients with DMD in the real world when compared with matched controls. Future research could focus on how emerging care standards impact these findings. In addition, as new medications are developed, future studies can provide a better understanding of the disease burden and costs of patient care.

“In the United States, the health care utilization and medical costs of DMD are substantial and increase with age,” the authors concluded. “The increased survival of DMD with ventilation and more effective cardiac management will likely be associated with increased medical costs in the future.”