How 4 Americans navigate the emotional and financial costs of ALS

For the roughly 5,000 people diagnosed with Amyotrophic Lateral Sclerosis, or ALS, each year, the disease is terminal.

And that number is increasing. An estimated 33,000 Americans had ALS as of 2022, according to the Centers for Disease Control, but the total is expected to rise to over 36,000 by 2030.

Because of its often rapid progression and debilitating symptoms, the cost of care can be extreme, leading many to call ALS the “bankruptcy disease.”

The average age of diagnosis is 55, but ALS can onset for people in their 20s and 30s, leaving many unprepared for the financial burden. While organizations like ALS Association and I Am ALS advocate for funding to support research and expanded healthcare coverage through Medicare and Medicaid, the disease can still be devastating for families.

“It’s a disease we’ve known about from the 1800s. It’s not that it’s incurable, it’s that it’s just been underfunded for so long,” Marianne Keuhn, vice president of care services at the ALS Association, tells CNBC Make It.

ALS costs patients enrolled in Medicare an average of $47,000 in their first year following diagnosis, a 2025 ALS Association study found. That amounts to an average out-of-pocket cost of $6,802, more than three times as much as the $2,050 those without ALS owe.

A 2024 study by biopharmaceutical company Biogen similarly found that average costs for people diagnosed with ALS rise from around $31,000 annually in the disease’s early stages to around $121,000 annually in the late stages.

For comparison, people with common cancer diagnoses and private insurance may face out-of-pocket costs averaging about $600 a month for the first six months after diagnosis, though that figure rises with advanced stages of cancer, a Journal of American Medical Association study found in 2025.

For ALS patients, the largest costs come from short-term hospital stays, which run over $11,200 on average for Medicare beneficiaries, compared with about $3,200 for those without ALS, the ALS Association study found. Durable medical equipment costs around $5,500 annually and prescription drugs run patients about $6,300 per year.

Those costs may explain why 25% of people with ALS or caring for someone with the disease say they have had to borrow money or go into debt to cover their costs, according to a separate 2020 survey from the ALS Association.

There is currently no known cure for ALS, and only about 20% of people with the disease live for five years or longer after diagnosis, according to ALS Association. Those who do often live with symptoms like losing their ability to walk, speak, swallow or breathe on their own.

“While everybody progresses differently, the majority of people that are diagnosed with ALS will pretty routinely end up needing to stop working fairly quickly into their disease,” Keuhn says.

There are limited options for ALS treatments, and those on the market are often new and may not yet be covered by insurance, Keuhn says.

Additionally, as the disease progresses, increased costs often follow, such as a person who goes from needing a cane to a wheelchair as their mobility declines, Keuhn says. Eventually, many families need to figure out how to cover the cost of full-time care.

To highlight the financial and emotional costs of the disease, CNBC Make It spoke with several individuals impacted by ALS, who shared how they navigate the life-altering diagnosis as well as some of the financial planning strategies that have helped them stay afloat.

Troy Fields had been working in sales for a global financial technology company for over 20 years when he first started experiencing symptoms like mild twitching in 2016. He says he “didn’t really pay a lot of attention” to it until the following year when he started having weakness in his fingers. 

Fields, now 61, was diagnosed with ALS in 2018, and although he continued working for as long as he could, he says “ALS forced me to retire” in April 2019, on his 26th anniversary with the company.

“I couldn’t really do the job the way I was used to doing it, even though the company was extremely supportive,” he says. “My boss (said), ‘You know, there’s no hurry. You take your time, you still have a lot of expertise.’ I just didn’t feel that I could do the job the way it should have been done.”

Fields earned six figures prior to retirement and had taken proactive steps in his financial planning before his diagnosis, including contributing to his 401(k) and long-term disability insurance. Eight years into living with the disease, Fields says the latter has greatly helped him and his family stay afloat and pay for many of his medical needs.

Fields lives with his wife, who he says has health issues of her own, and had planned to retire before him. But as his illness progressed, she stopped working in the fall of 2020 to take care of him.

“That’s another line item that we have to factor in when we talk about finances,” he says. “The fact that you have non-paid family caregivers that have to quit that income source to take care of their patients.”

ALS generally onsets in two different ways. Bulbar-onset affects speech, breathing and swallowing. Limb-onset affects arm and leg muscles. In either case, people with ALS don’t generally experience cognitive decline, Keuhn says, which can leave them feeling trapped inside their own body.

“They are completely dependent on others to help them with everything they need to do during the day — to eat, to use the restroom, to go to bed, to get dressed,” she says.

Fields is mostly paralyzed, but still has “some level of autonomy,” he says. He can communicate, write emails and operate his wheelchair on his own, but he has a caregiver who comes for a few hours a day to give his wife a break by helping him get out of bed, shower and do range of motion exercises.

Additionally, Fields says he has had to ask for financial assistance to help cover the cost of his care, both from family members, including his adult children, and through crowdfunding for specific needs. But he and his wife own their home, which he says helps him feel more fortunate than others with ALS.

Fields and his wife are “in a slightly better position than so many others,” he says, but “it is the bankruptcy disease for a reason.”

He says he’s glad his disease has progressed slower than it could have, but it’s a difficult tradeoff to know his family’s financial situation may have been better if his disease progressed faster. 

“Had I lasted two years, I would say, ‘Yeah, we were (financially) prepared,'” he says. “We were not prepared for eight.”

When Blaine Dangel started limping several years ago, she “didn’t even notice,” she says.

She says she saw several orthopedists, who prescribed rest and supportive footwear. But then Dangel’s mother, who had lived with a degenerative neurological condition for around 20 years and used a power wheelchair, started complaining of carpal tunnel symptoms.

Dangel’s wife, a clinical researcher, suggested that it wasn’t carpal tunnel. She came across a research paper that made her think Dangel’s mom had a slow-progressing form of ALS. 

Testing confirmed Dangel and her mother both have ALS and the SOD1 mutation, a genetic mutation found in 10% to 20% of familial ALS cases, per the ALS Association. Dangel was 38 at the time.

Dangel’s father previously passed away from Lewy body dementia. Even before she was diagnosed with ALS, Dangel says caring for her dad and handling his affairs after he died inspired her to make sure she had financial guardrails of her own in place. Although she says her father was “financially stable” for most of his life, he had no retirement plan and “spent all that he made.”

“I’ve had this unique sort of perspective where I’ve both been the patient and the caregiver,” the now 42-year-old says. “I’m pretty aware of all of the sort of financial potential burdens that (being sick) can put on your family around you.”

In addition to saving aggressively for retirement and staying mostly debt-free aside from the mortgage on the New York City apartment Dangel shares with her wife, she put a life insurance policy in place before she was diagnosed, which is a “luxury,” she says.

People who have been diagnosed with ALS generally won’t be able to get whole or term life insurance policies, according to Insurance Brokers USA.

Dangel still works as the chief product officer at invitation software company Paperless Post and considers herself in a “luxurious position” because of her slower-than-average ALS progression, she says. After getting diagnosed, she says her financial mindset didn’t change much aside from maxing out her and her wife’s health savings accounts and building a house in upstate New York so they could enjoy their time together.

Thanks to a promising medication for people with the SOD1 mutation, Dangel says her condition has been stable since she was diagnosed. But she recognizes her disease could start progressing at any time, and she and her wife are mindful to take advantage of this time.

“The things that we want to do, we go do them. The time that we want to spend with people, we make it a priority to spend with those people,” Dangel says. “I don’t want to take for granted the time that I have because I don’t know how long it will be.”

Mary Ann Abeska was already retired when she was diagnosed with ALS in 2015. She and her husband, Tim, who was still practicing law full-time, were planning to leave Indiana to retire in Maryland, where Mary Ann was born. 

“The plan was always for us to retire there,” Tim says. “We had bought a home, fixed it up for retirement and based on her progression, we figured out that we really needed to move sooner rather than later, so she could be home for her final time.”

He accelerated his own retirement, leaving his full-time practice in 2017 to care for his wife. But other than that change of plans, “it wasn’t a crisis from a financial standpoint,” Tim says. 

Mary Ann had served in the Air Force in the 1970s, so she received health benefits through Veteran Affairs. 

For unknown reasons, veterans are twice as likely as non-veterans to develop ALS, according to nonprofit I Am ALS. Some studies have suggested intense physical exertion, exposure to certain chemicals and physical trauma as possible reasons people in certain fields are more likely to develop ALS, according to the ALS Association.

In any case, veterans like Mary Ann are entitled to “service connected” benefits from the VA, which includes disability compensation as well as comprehensive healthcare benefits.

“I hate to use the word ‘fortunate’ and ‘ALS’ in the same sentence, but the reality is, the support of the VA was very helpful to us, and it didn’t create in our personal situation the need to scramble and start juggling finances and everything like that,” Tim says.

When he was around 40, Tim says a financial planner encouraged him to get long-term care insurance. At the time he didn’t think it was necessary, but he took out policies for himself and Mary Ann anyway. Although he “made a nice living” as a lawyer, it turned out to be a “big help,” he says. 

As Mary Ann’s disease progressed, they had in-home care to help for a few hours a day, which increased to 10 or 12 hours a day, which the long-term care insurance mostly covered, he says. Tim eventually moved Mary Ann into a hospice care facility, and she died on Jan. 1, 2019.

Mary Ann was able to express her preferred end-of-life arrangements with Tim before she passed, which he encourages families dealing with ALS or other terminal diagnoses to discuss.

“Few people actually like to think about this, the need for this, but it really is an act of love,” he says.

Tina Cascio achieved her longtime goal of buying a home outside of Chicago in December 2020 — just two weeks before she received her ALS diagnosis, she says. 

“I was in complete denial,” she says. But after bringing herself out of bankruptcy eight years earlier and fixing her credit, Cascio says owning a home on her own was a dream she refused to let ALS take away from her. 

Cascio lost her mother to ALS in 2018. At the time, Cascio had been experiencing symptoms like muscle spasms herself, but she “didn’t pay any attention to them” for several years. She was working as a nurse and caring for her mother full-time, so she attributed the symptoms to exhaustion. But when her cousin received an ALS diagnosis in August 2020 and confirmed it was genetic, Cascio had genetic testing done as well.

She was just 38 and earning nearly $80,000 around the time she was diagnosed, she says. Cascio continued working as a nurse for about a year after her diagnosis until her hands and legs didn’t work, she says. She now receives Social Security Disability Income. 

As of December 2020, Americans with ALS can receive SSDI benefits immediately after applying, following the passage of the ALS Disability Insurance Access Act. Typically, there is a five-month waiting period for SSDI benefits, according to the Social Security Administration. 

Because ALS can progress quickly and cut lives short, the waiting period was seen as an “unfair financial burden” for people with ALS, said Calaneet Balas, president and CEO of the ALS Association, when advocating for the law’s passage.

Cascio receives $1,861 in SSDI after her insurance premiums are taken out. The payment doesn’t even cover her mortgage, she says, but she’s glad to have her own home. “I don’t regret it at all, even though I’m struggling now,” she says. “This is mine. This is my comfort.”

Cascio’s frugal lifestyle allowed her to save a decent amount of money while she was working, she says, which helped her stay afloat and make accessibility upgrades on her home, including adding an elevator and a stairlift, in the first few years after she left her nursing job. Cascio also has a small amount sitting in an individual retirement account; “My brothers can pay for my funeral with it,” she says.

Once her savings ran out, Cascio started working at her brother’s pawn shop to help cover her bills. But a broken ankle coupled with other symptom progression forced her to quit, she says. She now receives financial help from a nonprofit organization to pay her mortgage.

“I have a very hard time asking for help, because I’ve always been a ‘do it myself’ kind of person,” she says.

Cascio’s mother lived with ALS for 12 years with the help of her family’s financial and physical support. But Cascio says she doesn’t know how she would be able to sustain herself with no spouse or children to help care for her if she has a similar trajectory. Her brothers both work six days a week.

She currently receives caregiving service through the state of Illinois, which includes an aide who helps take care of her house. Eventually she will need more help, she says, but the state doesn’t offer 24-hour care services, which can cost $40 or more an hour.

“I don’t make $40 an hour, so I don’t know how the future is gonna look, but I’m gonna fight like hell to get through it in the most gracious way I can,” Cascio says.