"We Are Undeniable": ALS Association Launches Campaign to Confront Insurance Denials

EmitenTrust.com Campaign gives families free tools to appeal denials now, as an Association review finds nearly all of 19 commercial insurers add hurdles the FDA never required for the first gene-targeted ALS treatment

ARLINGTON, Va., Oct. 14, 2026 /PRNewswire/ -- The ALS Association today launched We Are Undeniable, a national campaign to help people living with ALS fight insurance denials of the medications, equipment and care their doctors prescribe, and to push for lasting changes that stop those denials from happening. At the center of the campaign is the Undeniable Kit, a free, guided appeal letter builder modeled on appeals the ALS Association's pro bono legal team has won, available now at ALS.org/Undeniable.

"Insurance companies are weaponizing time against people living with ALS," said Calaneet Balas, president and CEO of The ALS Association. "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."

Kayla Gonzalez, a young mother of two in Utah, lives with SOD1-ALS, a rare genetic form of the disease. Her doctor prescribed Qalsody

, the first FDA-approved treatment for her form of ALS, and it was helping her. But when her husband Treven's employer changed health insurance providers, the new insurer denied her treatment in a single sentence: "not medically necessary." Treven contacted the ALS Association, whose advocacy team worked with a pro bono attorney to build Kayla's appeal. The denial was overturned, but not before the family lost time they could not afford to lose.

"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."

Kayla's experience is far from unique. In The ALS Association's ALS Focus survey on insurance and payment for ALS care, about one in three respondents had a claim or prior authorization denied, most often for medications, power wheelchairs and other equipment, or in-home care. Appeals took up to three rounds and up to six months, and about a third of requests were still denied or only partly approved, leaving people to pay out of pocket or go without. For a disease with an average life expectancy of two to five years after diagnosis, those are months no one can get back.

One family is a story. Nineteen insurers is a pattern.
The ALS Association reviewed the published coverage policies of 19 commercial insurers for Qalsody. Nearly everyone imposes clinical requirements the FDA never did, and about a third refuse to cover it at all, labeling an FDA-approved drug "investigational." The treatment does not cure ALS, but starting early can slow it, which makes every month lost to an appeal a month of function that may not come back.

"People living with ALS should not have to fight for care their physicians have already prescribed," said Melanie Lendnal, chief advocate of The ALS Association. "If a doctor prescribes it, you should get it, no excuses. We have won these fights one family at a time, and we will keep winning them. But no family should have to fight the same fight over and over again, which is why we are taking on the system itself."

Help for families facing a denial now
Through We Are Undeniable, people living with ALS and their caregivers can access:

• The Undeniable Kit, a free, guided appeal letter builder that walks families step by step through the information an appeal requires.
• Guidance on the appeals process, so families know what to expect and what is required at each stage.
• Pro bono legal help through The ALS Association's network of attorneys for complex appeals.
• A way to share their denial, helping the Association document the scope of the problem.

Building toward systemic change
Beyond individual appeals, We Are Undeniable is built around a simple principle: Approved Means Approved. When the FDA has approved a treatment and an ALS specialist has prescribed it, an insurer should not be able to deny it. The ALS Association will use the denials families share, along with its own research, to make the case for safeguards that protect timely access to prescribed ALS care.

People living with ALS, caregivers, and health care professionals can learn more, access appeal resources, and use the Undeniable Tool at ALS.org/Undeniable.

Interviews are available with the ALS Association's policy team, treating ALS clinicians, and families who were denied coverage.

About The ALS Association
Since 1985, The ALS Association has been the only national nonprofit fighting ALS on every front — research, care, and public policy. The ALS Association serves families in every state through more than 100 Certified Treatment Centers of Excellence and a network of 220+ clinics. The ALS Association is the largest ALS organization in the world, funding global research collaborations while advocating for better public policy for people with ALS. Learn more at als.org.

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SOURCE The ALS Association