Key Points:

• People diagnosed with ALS or ESRD are put on immediate Medicare coverage, but gaps persist

• A senator and a representative filed legislation to address gaps, but both efforts have stalled

• Opponents say the legislation would raise premiums, supporters say extra cost is manageable

For people diagnosed with amyotrophic lateral sclerosis (ALS) or end-stage renal disease (ESRD) before age 65, Medicare eligibility can arrive early but full financial protection often does not. 

That’s what Kevin Gallagher found when he was diagnosed with Primary Lateral Sclerosis, which is a related neurodegenerative disease. Later, the diagnosis became ALS. 

He lives in Arizona with his wife, Wendy, and they’ve been married for 36 years. She is a nurse practitioner and he trained as a paramedic and EMS instructor in Flagstaff. After he retired, Gallagher was going to teach pilots at a flight school co-owned with a friend. He had been a pilot since the 1970s. But when he got the diagnosis, he wasn’t able to fly anymore. 

When someone receives a diagnosis for ALS or end-stage renal disease, which is the last stage of chronic kidney disease, they are automatically and immediately enrolled in Medicare and supplemental insurance (commonly known as Medigap), regardless of age. However, supplemental insurance coverage that accounts for the remaining 20% of what Medicare plans don’t cover is left up to the states, Gallagher said.  

Eventually, Gallagher learned he wouldn’t be able to buy a Medigap policy because he was under 65, he said. Medicare Advantage was technically available, but it amounts to private insurance and pre-approvals, referrals and a network of doctors, Gallagher said. 

“You get a little bitter for those things and that was kind of a blow to have to get Advantage,” he said. Another surprise that came with Advantage was finding out that policies can be limited by county and zip code. “Since I lived in Maricopa and Maricopa resides in Pinal County, which has always been a mystery to me … there was not a single policy that would cover my ALS doctor and my ALS clinic.”

An ALS clinic completes several appointments in one visit every three months. A team of providers meets with the person and makes a care plan, Gallagher said.

The Arizona couple faced a choice between keeping their house, which was next door to Wendy’s elderly parents, or moving to Phoenix for better coverage.

Gallagher said he did look into neurologists available under Advantage, but none of them specialized in motor neuron or neuromuscular diseases, and one even referred him back to the doctor he had been seeing, saying he was the best in the state.

At that point, the Gallaghers were able to sell their home and rent a house in Phoenix, though it was a difficult decision, he said. Even after finding an Advantage policy, it still had a high copay because his doctor was out of their network and he put off a few treatments that were not covered, such as Botox injections that help control spasticity in his jaw to help him speak.

Once he turned 65, his insurance journey improved. Gallagher got a ventilator for nighttime use, and a respiratory therapist came to his house to show him how to use it. In contrast, Gallagher knows another person with ALS who was prescribed a ventilator, but it took a year of refusals and reapplications just to receive it. When it was granted, it was dropped off on the porch with no respiratory therapist to help, Gallagher said.

It’s a situation many people face if they’re diagnosed younger than 65, resulting in life changes for the whole family, especially when it comes to mobility, Gallagher said. 

“When you see someone that you know from your past and then see him in this situation, it’s a wake up call,” Rep. Selina Bliss, R-Prescott, said.

House Bill 2433 would require insurers to offer Medicare supplement insurance policies to people with ALS or End-Stage Renal Disease, even if they’re not 65 yet. The bill would also prohibit insurers from charging higher premium rates based on age. 

Bliss said her bill wouldn’t cost the state money. 

According to a fiscal note, the Joint Legislative Budget Committee estimated it could increase Insurance Premium Tax collections by $91,300 annually due to 1,055 individuals enrolling in Medigap plans, and potentially raising premiums. 

The bill does not affect the Arizona Health Care Cost Containment System or state employee health insurance. The Department of Insurance and Financial Institutions did not provide an estimate for fiscal impact, according to the document. 

However, there’s about 600 people with end-stage renal disease and about 170 people with ALS in Arizona, according to the organization. 

“For every new diagnosis coming in, one leaves on the other side because the life expectancy is so short,” Bliss said. 

The bill unanimously passed the House Health and Human Services Committee in February, where Bliss serves as the chair. But the bill wasn’t heard in the House Rules Committee, the last stop before the House floor. 

Sen. TJ Shope, R-Coolidge, filed Senate Bill 1191, which is similar to Bliss’ bill, but it did not get heard in the Senate Finance Committee. He said he didn’t have a bill available to file a strike-everything amendment.

Senate Finance Committee Chair Sen. J.D. Mesnard, R-Chandler, said he’s very sympathetic to the issue, but there are many other insurance bills coming through his committee for other causes. He said he did his best to play Solomon and make the best decision. 

“If we add this one, and then we add this one, and we have this … everybody pays a higher premium,” he said. “Where’s the delicate balance because we have a group of vulnerable people and then we have just the affordability of health care for everyone.”

The Arizona Chamber of Commerce and Industry and the Greater Phoenix Chamber of Commerce opposed the bill. The Arizona Chamber of Commerce declined to comment.

Mike Huckins, senior vice president of public affairs and IT operations for the Greater Phoenix Chamber of Commerce, said they generally oppose health insurance and health care mandates that can increase the cost for all employers, employees and other covered individuals. 

“While this bill is well meaning, coverage, pricing and benefits provided by private health insurance should be negotiated between employers and insurance providers,” he wrote in an email. 

Marc Osborn, who spoke on behalf of Blue Cross Blue Shield Arizona during the February committee meeting, said premiums would increase about 30%, or $70 per member per month, based on an actuarial report they conducted. 

“The reason why the cost shift is so significant is that population, the ALS population and the dialysis population will always use their full Medicare supplemental benefits, and so therefore, those costs have to be shifted onto every other post 65 (member),” he said. “While it’s a very needy and deserving population, I appreciate all that, but the cost shifts to some of the most cost-sensitive seniors.”

While 19 other states have passed similar laws, Osborn said their rates are higher and they have different market conditions. 

But Bliss said those claims are false. In a February 2026 actuarial report by Berkeley Research Group, premiums would only increase by about $2 per month. If the bill passed, about 770 Arizonans with ALS or end-stage renal disease would be enrolled for Medigap, Bliss said.

A recent study published in the American Journal of Managed Care showed that the costs were only about three times more expensive for people with ALS and six times more expensive for people with end-stage renal disease. 

Nineteen states already passed similar laws and 12 of those states “boast higher Medigap enrollment percentages than the national average,” while seven have “below average market-wide Medigap enrollment, suggesting the laws are not negatively impacting a state’s Medigap market,” according to a letter written by ALS Arizona.