Out-of-pocket ALS costs create heavy financial burden for French families
Study: Patients, caregivers often need to stop working to manage disease
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- ALS creates a significant financial burden for French families despite full heathcare coverage.
- Families face thousands in out-of-pocket costs.
- Caregivers often stop working, which adds to the economic strain.
In France, the average family impacted by amyotrophic lateral sclerosis (ALS) has to pay thousands in out-of-pocket expenses to cover such things as mobility aids and paid caregivers — and because patients and caregivers often need to stop working to manage the disease, these expenses pile up on top of thousands in yearly lost income, according to a new study.
“Despite the full coverage of ALS within the French healthcare system and associated financial support, it remains a substantial economic burden for patients and families,” researchers wrote.
An early access version of the study, “The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France,” was published in the Orphanet Journal of Rare Diseases.
Direct costs of ALS largely covered by France’s insurance system
ALS is a neurodegenerative disorder that causes muscle weakness and eventual paralysis. The healthcare costs associated with managing ALS can be astronomical, but these costs aren’t the only way that ALS can impact a family’s finances.
People with ALS generally lose the ability to work, and family members are often forced to stop doing paid work so they can step in as unpaid caregivers — all of which means lost income for the family. Families may also have to pay out of pocket for certain types of aids and support.
In this study, researchers sought to gain a clearer picture of the economic impact of ALS on families in France, where direct costs of ALS healthcare are largely covered by the country’s publicly funded insurance system. The scientists conducted semi-structured interviews with dozens of ALS patients and caregivers, then calculated the impact of ALS on both lost income and out-of-pocket expenses.
“This is the first French study that estimated the economic burden of ALS to patients and relatives,” the researchers wrote, noting that the interviewed participants “included a broad patient population recruited in multiple centers covering the entire country, which should guarantee a sufficient level of representativity.”
Most patients had stopped working after 4 years of living with ALS
At the onset of ALS symptoms, roughly half of the patients were still working and the remainder were mostly retired. But by the time of the interviews, in which patients had been living with the disease for a mean of nearly four years, only 6% were still doing any type of work, mainly part-time. Some patients were still receiving compensation via publicly funded disability programs or long-term paid sick leave.
Most of the ALS patients (88%) had one or more family caregivers, primarily spouses. More than half (59.5%) of the caregivers had been working before the onset of ALS symptoms, but at the time of the interview, roughly two-thirds of these caregivers had either cut back on paid hours or quit working altogether.
Taking into account the lost income of both patients and caregivers, the researchers calculated that families affected by ALS in France lose approximately €7,633 (just under $9,000 in U.S. dollars) in annual income on average.
The researchers also calculated the cost of hiring a professional caregiver for the same number of hours caregivers spend caring for their loved ones. On average, family caregivers spent 115 hours on care duties per week, which would amount to €59,840 (about $70,300 U.S.) annually if a paid caregiver were to receive the minimum wage in France for the same hours.
Our results suggest that, even with the ‘generosity’ of the French health insurance system … [out-of-pocket] expenses remained a significant financial burden for families.
In addition to lost income, almost all (90%) of the interviewed patients also reported at least one out-of-pocket expense related to navigating ALS. These included home modifications and changes to personal vehicles, paid caregivers, mobility aids, and hygiene products. All told, the average family spent €7,764 (about $9,150 U.S.) in out-of-pocket expenses.
The researchers noted that out-of-pocket expenses were generally higher among patients who had been living with ALS for longer. Families that opted to pay for caregivers also tended to have higher overall out-of-pocket costs.
“Our results suggest that, even with the ‘generosity’ of the French health insurance system … [out-of-pocket] expenses remained a significant financial burden for families,” the researchers wrote.
The scientists concluded that their study underscores the substantial economic burden of ALS even in countries where direct healthcare costs are generally covered by public insurance.
They noted that these high out-of-pocket costs were seen even though France’s health coverage system is considered one of the most comprehensive in the Organization for Economic Co-operation and Development. This group includes many high-income countries, including much of the European Union, as well as the U.S., Canada, and Australia, among others.
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