Arlington, Va. – October 14, 2026 -- People living with ALS can now build an insurance appeal letter for free, step by step, using the new Undeniable Kit from The ALS Association. The kit anchors We Are Undeniable, a national campaign to help families contest denials of prescribed medications, equipment and care.
The kit is modeled on appeals won by the Association's pro bono legal team. The campaign also offers guidance on what to expect at each stage of an appeal, pro bono attorneys for complex cases, and a way for families to report their denials.
One Utah family's denial was overturned, but time was lost
Kayla Gonzalez, a 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. Then her husband Treven's employer switched health insurers, and the new insurer rejected the treatment in one sentence: "not medically necessary."
The Association's advocacy team worked with a pro bono attorney to build the appeal, and the denial was overturned. The family still lost time they could not afford to lose.
Survey respondents faced denials, up to three appeal rounds and six months of delay
In the Association's ALS Focus survey on insurance and payment, about one in three respondents had a claim or prior authorization denied. Medications, power wheelchairs and other equipment, and in-home care were the most common targets.
Appeals took up to three rounds and up to six months. About a third of requests were still denied or only partly approved, leaving people to pay out of pocket or go without. Average life expectancy after diagnosis is two to five years.
"A delay is a denial," said Calaneet Balas, the Association's president and CEO.
A review of 19 insurers found nearly all add requirements the FDA did not
The Association reviewed the published Qalsody coverage policies of 19 commercial insurers. Nearly all impose clinical requirements the FDA never set, and about a third refuse coverage entirely, labeling the FDA-approved drug "investigational."
The treatment does not cure ALS, but starting early can slow it. Each month lost to an appeal is therefore a month of function that may not come back.
The campaign pushes a principle: Approved Means Approved
Beyond individual appeals, the Association says an insurer should not be able to deny a treatment the FDA has approved and an ALS specialist has prescribed. It will use the denials families share, along with its own research, to argue for safeguards that protect timely access to prescribed ALS care.