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The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France
Part of Orphanet Journal of Rare Diseases
Independent publisher
This describes who publishes a source, not how reliable it is.
Open source (opens in a new tab)Link checked August 2026
About this source
Orphanet Journal of Rare Diseases’s research review.
Where this source is used
Used in 4 places across 1 domain.
Questions
Planning
Finance & Insurance
- How can ALS/MND affect finances?
Supports this
“Households living with ALS/MND can face out-of-pocket costs going up and income going down at the same time.”
A 2024 survey of 50 French families measured both sides in the same households. Ninety percent had paid for something out of their own pocket, averaging 7,764 euros a year and driven mainly by home and vehicle adaptations, while the average annual loss of household income was 7,633 euros. France covers ALS-related health care in full, so this is what was left after the health system had paid.
Among them, 45 (90%) patients declared at least once an out-of-pocket expense and the mean annualized cost was €7,764 (SD 9,776).
Out-of-pocket expenses related to non-medical costs - How can ALS/MND affect finances?
Supports this
“Caring for someone with ALS/MND often changes the carer's own paid work and reduces the household's income.”
Of the 25 spouses who were in paid work before the diagnosis, 16 changed their working arrangements: three stopped altogether, three went part time and four went on sick leave. Across all the households surveyed, the average yearly loss of income linked to those changes was 7,633 euros.
The corresponding estimated annual loss of family (household) income was €7,633 on average in the whole population interviewed.
Patients and family employment and income loss - How can ALS/MND affect finances?
Adds context
“Most people who are in paid work when ALS/MND starts leave the workforce, and it usually happens within about a year.”
Shows the same pattern in one country and covers the cutting-back half that the European study did not measure. Of the 24 people who were working when symptoms began, three were still working at interview, two of them part time, and others had moved onto invalidity status or long-term sick leave.
Only 3 (6%) of them were still working (including 1 full-time and 2 part-time), 13 (26%) in working age benefitted from a status of invalidity as defined by the French health insurance and 8 (16%) were in long term sick leave.
Patients and family employment and income loss - How might ALS/MND affect work and income, and what can help?
Adds context
“Most people in paid work when ALS/MND begins stop working within a year or two, and leaving work early carries a financial cost.”
Puts a figure on the income side in one country. Across 50 French households the average yearly loss of income tied to the patient and their family carers changing their work was 7,633 euros, on top of 7,764 euros of out-of-pocket costs.
The corresponding estimated annual loss of family (household) income was €7,633 on average in the whole population interviewed.
Patients and family employment and income loss
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