ALS Association launches campaign to fight insurance denials
Delays in coverage can have lasting consequences for patients
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- ALS patients often face insurance denials for critical treatments and equipment.
- The ALS Association has launched a campaign to help patients overturn denials.
- The We Are Undeniable campaign also provides access to volunteer legal assistance.
The ALS Association has launched a nationwide campaign to help people with amyotrophic lateral sclerosis (ALS) fight insurance denials that delay or prevent access to prescribed treatments, medical equipment, and care. The initiative also aims to push for lasting changes in insurance policies.
Called We Are Undeniable, the campaign centers on the Undeniable Kit, a free online tool that helps patients and families generate customizable letters to appeal insurance denials. It also offers guidance on the appeals process, access to volunteer legal assistance, and a way for families to report denials.
The campaign comes amid growing concerns about insurance denials that can leave people with ALS waiting weeks or months for essential treatments and care. Such delays can have lasting consequences for people with a rapidly progressive disease such as ALS, as physical abilities lost during that time generally cannot be recovered.
“Insurance companies are weaponizing time against people living with ALS,” Calaneet Balas, president and CEO of the ALS Association, said in a press release from the U.S.-based nonprofit organization. “When someone is facing a fatal illness, a delay is a denial. Every week spent fighting an insurer is time families will never get back. We Are Undeniable gives people living with ALS the tools to fight back today, and our goal is simple: when a doctor prescribes a treatment, people with ALS should get it.”
Denials could mean losing valuable treatment time
ALS is a progressive disease that damages the nerve cells controlling voluntary movement, leading to symptoms such as muscle weakness and wasting that can eventually affect the ability to walk, speak, swallow, and breathe.
There is currently no cure for ALS, but some treatments may slow disease progression, making early access particularly important. Missing doses because of insurance denials could mean losing valuable treatment time as the disease continues to progress. Supportive care and medical equipment can also help people maintain independence and quality of life.
For Kayla Gonzalez, a mother of two from Utah living with ALS caused by a mutation in the SOD1 gene (SOD1-ALS), an insurance denial interrupted access to Qalsody (tofersen). The first treatment approved by the U.S. Food and Drug Administration (FDA) for SOD1-ALS, Qualsody is designed to reduce production of the harmful SOD1 protein that contributes to nerve cell damage in this form of the disease.
The ALS Association was our lifeline during the appeals process. They stepped in, connected us with the right people, and never stopped fighting for us.
Gonzalez was receiving Qalsody and was benefiting from it. But when her husband’s employer changed health insurance providers, the new insurer denied coverage, deeming the treatment “not medically necessary.”
Her husband, Treven Gonzalez, turned to the ALS Association for help.
“I didn’t even go looking for them. They found me,” he said in a video sharing Kayla’s story.
The organization connected the family with its advocacy team and a volunteer attorney, who helped challenge the decision. The denial was eventually overturned, allowing Kayla to resume treatment.
“When Kayla’s treatment was denied, I felt lost and overwhelmed,” said Treven Gonzalez. “The ALS Association was our lifeline during the appeals process. They stepped in, connected us with the right people, and never stopped fighting for us. Their support helped restore access to a treatment that means hope for Kayla and our entire family.”
‘Find an advocate’
Another family facing similar challenges is that of Jeremey Snyder, who was denied coverage for Qalsody shortly after being diagnosed with SOD1-ALS.
“It’s been horribly difficult,” his mother, Rosemary Snyder, said. “Jeremey was diagnosed with SOD1 ALS just before Christmas, and the denial for Qalsody came immediately. He was devastated. He couldn’t face fighting it. He said, ‘I can’t, Mom. I just can’t.’”
Rosemary Snyder described struggling to navigate the insurance system before receiving help from the ALS Association.
“Every number I called sent me somewhere else. The ALS Association has helped us every step of the way, starting with the initial appeal, and they’ve been right there through all the roadblocks since,” she said. “If you get a letter like this, don’t try to do it yourself. Find an advocate.”
Some respondents reported appealing decisions up to 3 times
These families’ experiences are not isolated. A white paper ALS Focus survey conducted by the association in late 2022 showed that 1 in 3 respondents who had submitted an insurance claim or prior authorization request reported at least one denial.
Denials affected medications, mobility equipment, and in-home care. Some respondents reported appealing decisions up to three times and waiting as long as six months for a final resolution. Even after appeals, about one-third of requests remained denied or were only partly approved, forcing some families to pay out of pocket or go without needed care.
In a separate report, the association reviewed Qalsody coverage policies from 19 commercial insurers. Nearly all imposed requirements beyond those in the FDA-approved prescribing information, while about one-third classified the treatment as investigational, not medically necessary, or otherwise excluded it from coverage despite its FDA approval.
We Are Undeniable was launched to help families challenge such decisions. The Undeniable Kit’s letter builder is modeled on successful insurance appeals handled by the association’s volunteer legal team. Families can also report denied claims, helping the organization document how widespread the problem is and build evidence to support changes in insurance policies.
Beyond helping families overturn individual denials, the campaign seeks to ensure that FDA-approved ALS treatments prescribed by specialists are covered without additional restrictions that could delay care. The ultimate goal is to prevent people with ALS from having to spend valuable time fighting for treatments and care their doctors have already prescribed.
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