Healthcare Costs for DMD Patients in US 10 Times That of Healthy Youth, Study Finds

Healthcare costs for patients with Duchenne muscular dystrophy (DMD) are about 10 times those of healthy people, and increase as patients age, according to a new analysis of claims data.

The figures, which may aid in healthcare planning and evaluating costs of emerging treatments, were — for the first time — used to calculate costs for Duchenne patients only. This is an important distinction because less severe forms of muscular dystrophy are likely linked to lower costs.

The study, “The Direct Cost of Managing a Rare Disease: Assessing Medical and Pharmacy Costs Associated with Duchenne Muscular Dystrophy in the United States,” was published in the Journal of Managed Care & Specialty Pharmacy.

Earlier attempts to estimate the expenses of Duchenne care have been hampered by the lack of a specific diagnostic code for DMD. The three researchers behind the report — from Optum Health Economics and Outcomes Research, GlaxoSmithKline, which funded the study, and University of California Davis Health System — developed an algorithm to get around the problem.

The algorithm took into account claims data using diagnosis codes, pharmacy prescriptions and procedure codes unique to the management of Duchenne muscular dystrophy, based on disease clinical milestones.

Using data from 2000 to 2009, the research team identified 75 patients, and matched them to 750 healthy people by age, sex and region. Patients averaged 13 years old and all were boys. The study did not include patients older than 30.

Duchenne patients had significantly more healthcare appointments, including twice as many office visits, six times as many outpatient visits and 10 times the hospital stays of healthy controls. They also had four times as many prescriptions filled per year. Medical costs were $21,079 higher than those of healthy people, who had an annual cost of $1,451. When researchers included $1,186 in higher annual pharmacy costs, the difference between the groups was more than $22,000.

An analysis of annualized total health care costs estimated that Duchenne patients had 10-fold higher costs compared with healthy people — $23,005 compared to $2,277. Splitting patients into four age groups showed that costs were higher among all of them, but for ages 14-29 expenses were particularly high — $40,132 compared to $2,746.

Researchers noted, however, that Duchenne patients need more than medical resources. Medical devices and assistive technology are also essential to ease the condition, they said.