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Insurance won't cover life-extending medication for Valley man with ALS

Joe Delvecchio
Posted at 5:45 PM, Feb 18, 2020
and last updated 2020-02-19 12:40:57-05

SURPRISE, AZ — Last year, he was working in his garden and building custom wood furniture. Today, he struggles to lift a milk jug.

51-year-old Joe Delvecchio thought beating cancer in 2016 - and going bankrupt because of it - was the toughest battle he'd face until he was diagnosed with amyotrophic lateral sclerosis (ALS) in 2019.

In 2019, Delvecchio's insurance covered all his medications, hospital visits and doctor visits. In 2020, his policy changed and his insurance would only cover his medication at 40 percent. One medication alone out of pocket costs $1,000 per day.

"It angers me. If there's a chance it buys me an extra year of life, they're denying me one more year with my family," says Delvecchio.

Beyond medication, Delvecchio needed a power wheelchair to get around. Fortunately, the ALS society, The ALS Association Arizona Chapter, gifted Delvecchio a used wheelchair. He says it would've cost $36,000.

The ALS Society also donated a number of items like a hospital bed, necessary for Delvecchio to have any quality of life.

"No insurance companies pay for bathroom equipment so something as simple as a shower chair can cost $1,500," says ALS Society Nurse Educator Janie Dalrymple.

Delvecchio doesn't fear death. He fears leaving behind his family - especially his 9-year-old granddaughter Ella. Delvecchio says he used to do everything with her from homework to "fun things." Now, he can't do those things anymore.

Another worry, the medical debt Delvecchio will leave behind totaling nearly $300,000. Until then, he's savoring what little time he has left and hoping no one else will go through his same struggle.