The surprising legacy of the ALS ice bucket challenge

Listen
Massachusetts Gov. Charlie Baker, right center, and Lt. Gov. Karyn Polito, third from left, participate in the Ice Bucket Challenge with the man who inspired the event, Pete Frates, seated in center, to raise money for ALS research, at the Statehouse in Boston. Frates, who was stricken with amyotrophic lateral sclerosis, or ALS, died Monday, Dec. 9, 2019. He was 34. (AP Photo/Charles Krupa, File)

This story is from The Pulse, a weekly health and science podcast.

Find it on Apple PodcastsSpotify, or wherever you get your podcasts.


In 2014, a dare turned into a movement. Florida Pro golfer Chris Kennedy recorded himself pouring a bucket of ice water over his head — and challenged several others to do the same within 24 hours. If not, they had to make a $100 donation to an ALS nonprofit.

The golfer then challenged several others to do the same thing. Pete Frates, a former Boston College baseball star who had been diagnosed with ALS, heard about the challenge and started promoting it.

  • WHYY thanks our sponsors — become a WHYY sponsor

The rest is viral history.

It became a fun dare, a feel-good way to fight an especially devastating disease. ALS stands for amyotrophic lateral sclerosis. It attacks the nervous system and patients gradually lose all motor function.

Celebrities got in on the challenge, politicians, and it raised $115 million that summer.

“That’s double The ALS Association’s typical annual fundraising revenue, said Emily Haynes, a reporter with the Chronicle of Philanthropy, who covered the movement and followed the money.

“That’s just huge. You never see increases like that when it comes to a fundraising campaign,” Haynes said. “And to have done it almost accidentally through this viral campaign is, I mean, it’s pretty unheard of.”

The ALS Association was never able to replicate this kind of enthusiasm or level of giving in the following years — but that first, incredible downpour of millions and millions of dollars is still having an amazing impact.

The mission of the ice bucket challenge was to raise money for research — research that would eventually lead to a cure for ALS. Haynes explained that the huge initial influx of cash was generally well spent, with $80 million going straight to research. There are now more clinical trials for ALS than ever before.

“But just to give you a sense of the cost of that research, it takes roughly $2 billion to take just one treatment from the research stage to the market stage. So, all of the money raised from the ice bucket challenge, that $115 million, that’s not enough to fully fund even one treatment,” she said.

ALS researchers are excited about genetic markers they’ve identified as associated with ALS though it’s not a genetic disease.

It’s a breakthrough scientists credit to the ice bucket challenge.  But a cure still seems a long way away. Realistically, most people who have ALS don’t have time to wait. The illness is progressive and aggressive — patients typically die within a few years of diagnosis.

Haynes says this led to a bit of a conundrum when it came to spending this money.

“There is tension in terms of whether The ALS Association should be using this windfall to support patients living with the disease versus researching a cure,” she said. “Do we focus our efforts on eliminating the problem or on kind of ameliorating the problem?”

A cure or comfort? Haynes sees the merit of both sides. It’s an unfortunate, ruthless statistical reality that most of those diagnosed with ALS at the time of the famous ice bucket challenge have since passed away. Pete Frates — one of the main forces promoting the challenge — died in 2019.

So, while most ALS patients don’t have time to wait for a cure or a big breakthrough, in the meantime, they have urgent needs.

Pall Bearers escort the casket of Pete Frates, draped in a flag bearing his name, following a funeral mass for Frates at St. Ignatius Church in Chestnut Hill, Mass. on Friday, December 13, 2019. Mr. Frates was 34 when he died in his Beverly home, his family at his side. Through his work helping to raise tens of millions of dollars by popularizing the ice bucket challenge, his impact on ALS research will be felt for generations. (Craig F. Walker/Globe Staff)

The Equipment Wait List

Jennifer Hjelle was the head The ALS Association, Minnesota/North Dakota/South Dakota Chapter, during the famous ice bucket challenge year.

“If you think about somebody’s progression with the disease, they might first need a cane, but then they might need something more substantial, like a walker, Hjelle said. “They might then need a scooter — that might lead to a power wheelchair.”

The progression from cane to walker to wheelchair can happen very quickly — which often leaves patients in a lurch.

“Oftentimes, people don’t need that piece of equipment for a long period of time. And because of how our insurance system works you often can’t get multiple pieces of equipment covered,” she said.

Subscribe to The Pulse

Local ALS chapters like Hjelle’s have equipment that they loan out to families.

“Because we want you to have what you need when you need it,” Hjelle said.

But those items are expensive. There were wait lists. Each name representing a desperate person — basically trapped in their body.

Then, the donations started pouring in. After the lion’s share of ice bucket challenge money went to the national organization earmarked for research, the rest — still tens of millions of dollars — went to these regional chapters.

  • WHYY thanks our sponsors — become a WHYY sponsor

“We went from literally like 20 donations in July to thousands in August. And in addition to that, I’ll never forget our office manager coming into my office, and she had a stack of mail about a foot high, and she said to me, ‘I just want you to see this, because normally this stack is about an inch high in the day,’” she said. “And it was a foot high and that was just one day’s mail.”

Basically, everyone knew where the money should go almost immediately: the equipment loan pool.

“I will tell you, the team that called all the families that were waiting for pieces equipment to tell them, ‘Look, we know you have been waiting for this. We’ve purchased you a new one. It’ll be here on this date.’ I mean, it was like being Santa Claus on Christmas morning,” Hjelle said. “It was a game changer.”

Eight years after an ice bucket challenge they couldn’t replicate, still years away from anything like a cure, they have this one enduring victory. No more wait lists.

“We haven’t had a waitlist since,” Hjelle said. “And that is a really big deal for people living with ALS and a huge testament to the power of that movement.”

The existence of this loan program — and the reason why tens of millions of dollars went to medical equipment instead of a cure is basically: Medicare, the tedious insurance rules, and regulations around what gets paid for and when.

“The original reason that the loan program started was because Medicare wouldn’t cover bathroom equipment,” Hjelle said.

That can be stuff like bath chairs or toilet seat risers.

“Those pieces of equipment were deemed luxury items, which still blows my mind to this day. I mean, these are basic items that help people continue to not only be independent, but maintain dignity,” Hjelle said.

It’s an onerous system to navigate to get this kind of stuff paid for.

One of the most common things on the wish list was one of the more expensive items: power wheelchairs. They can run tens of thousands of dollars, a ticket price way too high to pay out of pocket for most.

“It’s unfortunate conversations I have every day in clinic when I evaluate someone and they say, “okay, when can I pick up my chair? And I’m like, it’s going to be about three months.” And then they’re dumbfounded,” said Mark Schmeler, an assistant professor at The University of Pittsburgh School of Health and Rehabilitation Sciences.

He says the case of ALS illustrates a problem all people who rely on power wheelchairs face, just in a very acute way.

“Medicare policy clearly states that you can only get what you need when you need it. And sadly, everybody knows if we can wait this out, if we can throw barriers to this, eventually, they’re not going to need it because they’re not with us anymore,” Schmeler said. “And that’s a really sad tactic.”

The reality is someone with ALS may only have a few months where a power wheelchair will do them any good before the disease makes them unable to use one and instead forces them into a medical bed.

So, how can something as critical as a power wheelchair be so hard to get?

 

Amyotrophic lateral sclerosis patient Pete Frates, center, known for popularizing the ice bucket challenge to raise funds for ALS research, sits on the sideline before an NFL football game between the New England Patriots and the Atlanta Falcons, Sunday, Oct. 22, 2017, in Foxborough, Mass. (AP Photo/Charles Krupa)

Call this 1-800 number

“About 15, 20 years ago, there was just rampant waste, fraud, and abuse occurring,” Schmeler said.

It started with these late-night commercials; you may have heard them. They hocked a variety of power scooters, happy grandmothers scooting around town or on vacation.

The pitch was something like: can’t walk that far or that fast anymore? Need help getting from point A to point B? No problem.

The commercials basically said you probably qualify for one of these fancy chairs, call this 1-800 number. And a lot of people did just that.

“And the utilization by Medicare, for example, went from spending about $200 and maybe $300 million a year on basic power, wheelchairs and scooters to over $1 billion,” Schmeler said.

The problem was these mobility scooters were being marketed as a convenient way to get around for people who could use some help — as opposed to medical equipment for those who couldn’t get around at all without them. So, people who didn’t need them, got them anyway, with Medicare footing the bill. And a lot of middlemen got rich in the process.

Some even shadier actors were simply billing for chairs that never got to anyone. It was just too easy to get the government to pay for these things.

These mobility scooters are a lot like the ones you might see at a Walmart, nothing nearly as complicated as the stuff an ALS patient might need, but to regulators, that didn’t matter. Regulations for complex power wheelchairs were tightened the same time as regulations for your off-the-shelf plain jane variety.

“They’re a secondary victim, the complex wheelchairs where we’re just collateral damage because of the late-night TV,” Schmeler said. “We were not the ones committing fraud.”

Mark says it’s unfair that his patients must battle to get these chairs paid for, while other aspects of mobility tech are covered.

“I always said there’s a double standard here when it comes to comparing prosthetic limbs to power wheelchairs. They both cost about the same. They fundamentally serve the same purpose. But for some reason, the wheelchair doesn’t get the same attention or justice that the limbs do.”

Just like prosthetics, power wheelchairs must fit their specific user’s needs.

“You get into the complex devices that people are going to be sitting in all day, it has to be fitted specifically to your size, fit to specifically to what seat functions you’re going to need,” he said. “Repositioning is extremely important, and we all shift our weight about every 15 seconds. We may not realize it, but we’re constantly moving while we’re sitting.”

Some chairs are guided by a joystick, others by mouth — a sip and puff method. Some can stand a user up, they tilt or recline this way or that to avoid pressure injuries. They all need repairs and maintenance.

These chairs are a big investment, and they have a limited lifespan because they are tailored to the needs of one user. As I was writing this story, I passed a power wheelchair on the curb, ready to be taken with the house trash and recycling.

“The supplier doesn’t want to take it back because it’s customized to an individual. So, the family wants to get rid of it and their insurance is most likely paid for the device, but there’s really no secondary market,” Schmeler said.

So, amid shortages and wait lists, a lot of power wheelchairs, their owners recovered or more likely passed on — they just sit idle. Fonts of tough memories stashed away in garages or basements.

The ice bucket challenge solved this big issue for the thousands of Americans living with ALS — but many thousands more — people with spinal injuries, other neurological diseases – they remain waitlisted. No viral campaign came to their rescue.

“People only know it’s a problem when they need it. So, if I’m talking to someone, you know, just a common person or even sometimes talking with legislators or policymakers, they may not want to take the time to hear what we’re saying,” Schmeler said.

Like ALS itself, an extremely rare disease, access to power wheelchairs is an easy problem to ignore, that is, when it’s not your problem.

  • WHYY thanks our sponsors — become a WHYY sponsor

Want a digest of WHYY’s programs, events & stories? Sign up for our weekly newsletter.

Together we can reach 100% of WHYY’s fiscal year goal