Closing the Gap for Arizonans Living with ALS

By Cherie Stone

For patients diagnosed with amyotrophic lateral sclerosis (ALS), time is measured differently. ALS is a progressive and terminal neurodegenerative disease that takes away a person's ability to walk, speak, eat and breathe. The life expectancy for those living with ALS is only two to five years post-diagnosis. Access to specialized medical care is necessary for ALS patients, and can determine whether patients are able to access the neurologists, therapists, equipment, medications and multidisciplinary care they require as the disease progresses.

Medicare is generally associated with individuals who are age 65 and older. However, ALS is specified in federal law as a medical condition that can qualify an individual for Medicare before age 65. This establishes Medicare eligibility for people with ALS, regardless of age. While Medicare provides important coverage, it does not pay for 100% of all covered costs. Supplemental insurance plans, such as Medigap plans are designed to help fill some of these gaps. 

Medigap policies help people enrolled in Medicare pay a portion of the costs that Medicare does not cover, including certain deductibles, coinsurance and copayments. Federal law guarantees a six-month Medigap open enrollment period when an individual age 65 or older first enrolls in Medicare Part B. During that period, insurers generally cannot deny coverage based on the person's health history.

But federal law does not require insurers to offer Medigap policies to people under 65 who qualify for Medicare because of ALS. Whether those individuals have access to Medigap is determined by individual state law. There are currently 36 states that require insurers to offer Medigap policies to individuals who are under the age of 65 with disabilities. Of those states, 25 specifically require that Medigap policies be available to individuals with ALS. 

Arizona is among a relatively small group of states that have not established comparable protections for Medicare beneficiaries under 65 years of age. People with ALS can qualify for Medicare before age 65 because of their diagnosis. But once they enter Medicare, Arizona law does not guarantee that they can obtain the same supplemental insurance protections available to people who become eligible for Medicare at age 65 and Arizona currently does not require Medigap insurers to offer supplemental policies to Medicare beneficiaries under age 65. As a result, Arizonans who qualify for Medicare because of ALS or another disability may have limited options for supplemental coverage that are not available to Medicare beneficiaries once they reach 65. 

This results in situations where two patients with the same diagnosis, the same medical needs and the same Medicare coverage can have strikingly different access to supplemental insurance simply because one is 65 and the other is 64. This distinction can result in major financial and practical consequences for ALS patients, as having access to supplemental coverage can provide more than just financial predictability for individuals living with ALS. It also gives patients and their families the ability to focus on medical care, caregiving and quality of life rather than on whether they can afford the next bill. Further, people with ALS who receive multidisciplinary care can experience longer survival timeframes and improved quality of life. For patients and families, every additional insurance barrier essentially becomes another burden to navigate.

Arizona lawmakers recognized this disparity and considered a measure to require insurers that offer Medicare supplement policies to people age 65 and older to also offer those policies to people under 65 who are enrolled in Medicare because of an ALS diagnosis. While the proposal received strong bipartisan support, the bill ultimately stalled in the House Rules Committee and did not advance to a House floor vote before the Legislature adjourned.

The legislature’s failure to advance the measure does not mean the underlying problem has gone away. If anything, the discussion during the 2026 session highlighted why the issue deserves further attention and discussion. The goal of changing Arizona law should not be to eliminate every challenge associated with ALS. No insurance policy can do that. But policymakers can eliminate unnecessary barriers that make an already difficult situation harder.

Ensuring access to Medigap for Arizonans with ALS under age 65 would give patients another tool to manage the substantial costs associated with a rapidly progressive disease. It could provide greater predictability for families, support continuity of care and help patients access the specialized providers and services they need without having their insurance options determined by an age threshold that is ultimately unrelated to the severity of their disease.