By Amanda K. Kehrberg | Thoughts on Innovation
An ALS diagnosis is devastating at any age. But in Arizona, getting sick “too young” can also mean being locked out of affordable health coverage.
People living with ALS qualify for Medicare regardless of age. What many don’t realize is that Medicare only covers 80 percent of medical costs. The remaining 20 percent – for doctor visits, respiratory care, mobility equipment, and communication devices – is typically covered by Medicare Supplemental Insurance, known as Medigap.
Unless you’re under 65.
The average ALS diagnosis comes at just 55, with about 10% of cases diagnosed before 45. These are parents tucking kids into bed, professionals still building careers, families trying to hold onto normalcy as everything shifts.
In Arizona, people who qualify for Medicare due to ALS before age 65 are barred from Medigap plans altogether. Their only option is Medicare Advantage: plans that often restrict provider networks, delay access to specialty clinics, and impose high out-of-pocket costs that quickly become unmanageable.
It’s time for Arizona to step up and close the gap.
That’s why Rep. Selina Bliss and Sen. T.J. Shope have introduced two bills, HB 2433 and SB 1191. This legislation would ensure that Arizonans diagnosed with ALS or end-stage renal disease before 65 have the same guaranteed access to affordable Medigap plans as those diagnosed later in life.
Arizona is behind the curve. Thirty-six states already require some level of Medigap access for people under 65, and 19 have passed laws specifically improving affordability. Nevada and Texas did so just last year.
The benefits are clear. Patients gain financial stability and timely access to quality care. Families avoid impossible choices between medical bills and basic living expenses. And, Arizona saves money by reducing the number of people forced onto Medicaid simply because they lack affordable supplemental insurance.
The cost? None to the state budget. Even if insurers pass along the full projected impact, the average Medigap premium increase would be about one dollar per month.
Time matters: SB 1191 must be heard in the Senate Finance Committee before Saturday, Feb. 21, or the bill will stall, leaving families with ALS exactly where they are now.
On March 19, Arizonans living with ALS and their families will gather at the State Capitol for ALS Awareness Day. But lawmakers have the chance to hear and honor their experiences now, by advancing this commonsense, compassionate fix.
Editor’s Note: Amanda K. Kehrberg is a regular volunteer at ALS Arizona
