Households caring for DMD patients face high costs: US survey
Modified vehicles, medical equipment among major expenses, caregivers say
Households incur substantial costs to accommodate people with Duchenne muscular dystrophy (DMD), according to a survey of patient caregivers in the U.S.
Costs, such as those for purchasing and/or modifying an accessible vehicle, relocating to or building an accessible home, modifying home entrances, and buying medical equipment, were particularly high for households caring for patients with more advanced disease and limited walking abilities.
“The study findings provide additional insight into the significant financial impact that DMD poses on caregivers and households,” the researchers wrote.
Survey details were reported in the study, “Household costs in the United States for accommodating functional impairments associated with Duchenne muscular dystrophy: results from a caregiver survey,” published in the Orphanet Journal of Rare Diseases.
DMD is a progressive neuromuscular disorder with muscular dystrophy symptoms, including motor and developmental delays, beginning in early childhood. Continued muscle deterioration leads to a loss of walking abilities, upper limb impairment, and a decline in lung function.
Insurance doesn’t cover all costs
Because DMD affects children, families caring for a DMD patient are generally responsible for medical costs not reimbursable by health insurance. This may include clinic visits, professional caregiving, medications, surgical interventions, and supportive therapies, such as physical therapy. Some families may need to modify their homes by widening doorways or remodeling bathrooms, while others may consider moving into more accessible homes.
“To better characterize the full financial impact of DMD, there is a need for detailed research regarding the costs borne by patients’ families,” wrote a team that included researchers at Sarepta Therapeutics, who conducted an online survey on DMD-related caregiver costs in U.S.-based family members of DMD patients.
A total of 90 caregivers of 106 DMD patients responded to the survey. Nearly all caregivers were women (94.4%), white (90%), and the primary caregivers (82.1%). Most individuals had both medical and pharmacy coverage during the previous year.
More than half (59.4%) of the DMD patients were unable to walk, about one-fourth (23.6%) could walk, and about one-sixth (17%) were transitional. About one-third of the participants had either no upper limb impairment (37.7%) or mild impairment (36.8%), while one in four (25.5%) had moderate to severe impairment.
Survey results showed that over five years, a mean of $78,303 was spent on home and vehicle purchases or modifications across all households. The most common expenditure was the purchase and/or modification of an accessible vehicle (mean $30,932).
Moving to or building a new home was the second most expensive item (mean $19,679), followed by modifying home entrances (mean $10,236). The mean cost for medical equipment was $14,071.
Regarding non-reimbursed payments per year for health services or drugs, the most expensive items were healthcare visits and prescription drugs (mean $8,184), followed by in-home professional caregiving (mean $4,529), and then supportive therapy (mean $929).
Still, many caregivers reported having to forgo purchases or modifications related to homes, vehicles, or medical equipment due to the prohibitive costs of caring for a DMD patient.
On average, households paid for most (76.4%) of their home and vehicle expenses out of pocket, relying on external resources to cover the remaining costs. Non-government resources, including charitable foundations and funds raised, accounted for 18.2% of the remaining costs, while government resources covered 5.4%. For medical equipment purchases, government and non-government financial resources were similar (15% vs. 15.9%).
When broken down by walking status, the mean cost of home- and vehicle-related purchases was approximately three times higher in the transitional group ($92,247) and the nonwalking group ($87,168) compared with the walking group ($28,898). Similar results were observed for the cost of medical equipment.
Likewise, households were more likely to purchase or modify a handicap-accessible vehicle in the past five years as upper limb impairment worsened and pay more for other home modifications. Household costs for medical equipment and in-home professional caregiving also grew with worsening upper limb impairment.
Costs were generally higher for households with employer-sponsored insurance coverage only and for families who owned their own homes or had an annual combined income of $100,000 or higher.
“Families with individuals with DMD face a range of financial challenges and substantial household costs as they seek to provide the necessary support and accommodations for their loved ones,” the researchers concluded. “Costs were particularly high in households caring for individuals with more advanced disease and limited ambulatory function.”
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