Assessing the Financial Burden of ALS—FOCUS Survey Results

The emotional costs of ALS put a strain on every family who must face the disease. But even while a family faces these challenges, the financial costs of ALS are there as well. The cost to a person with ALS averages around a quarter of a million dollars over the course of the disease. That cost comes in the form of piles and piles of bills, insurance forms, and more forms, and more bills. And while each family’s financial challenges are different, the reality is that these challenges make an already difficult situation that much more so.

To better understand these challenges, The ALS Association and its partners made “understanding the insurance needs and financial burden” of people with ALS the topic of the first ALS Focus survey conducted earlier this year, the results of which are now available.

Overall, the results paint a picture of the burden people with ALS and their caregivers face in maintaining insurance coverage, understanding what is covered and what isn’t, and paying for medical treatments and services.

The final sample for this ALS Focus survey included 204 people living with ALS, 118 current caregivers, and 122 past caregivers (444 participants total). All those surveyed opted-in to participate.

Perhaps not surprisingly, the cost of medical treatments and services topped the list of stressors from respondents, with one in four saying they experienced debt or had to borrow money due to ALS treatments or caregiving. Respondents also indicted that the costs of ALS were not only measured in dollars, but time as well, with one in four also saying they worked longer than planned after an ALS diagnosis. Nearly half (42 percent) of those who did in fact work longer did so to maintain health insurance.

Indeed, maintaining health insurance was a significant cause of stress for respondents. One in ten reported that they had lost health insurance after an ALS diagnosis, with two-thirds of those who lost insurance reporting that it was because of ending employment.

And even for those who have health insurance, figuring out coverage and navigating the seemingly endless letters, statements and forms is an ongoing challenge for many, with nearly half of respondents reporting that they found understanding insurance coverage either stressful or very stressful.

While the results of this survey will likely resonate with many, they are not intended to represent the full population of people with ALS and their caregivers in the U.S., but the needs, burdens, and experiences of those who participated in the survey. In fact, the challenges faced by some could be more pronounced than the data indicates as most of the people who participated in the survey reported being in the mid- to high socioeconomic bracket. The hope of the ALS Focus team is that future surveys reach an every expanding group of respondents from varied backgrounds.

On August 14th, the second ALS Focus survey around “what matters most” to people with ALS and caregivers launched. This three-minute survey delves into how ALS symptoms and daily functions impact their lives. If you haven’t already, sign up now and share your insights.

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