Ice Bucket Challenge Founders Push for Congressional ALS Action

The Ice Bucket Challenge was a phenomenon that raised millions of dollars to fight ALS

The Ice Bucket Challenge was a phenomenon that raised millions of dollars to fight ALS. Now the family of the man who popularized the challenge is pushing for Congress to take action.

“People are making a choice to die instead of living on machines,” said Nancy Frates.

Her son Pete Frates was diagnosed with ALS in 2012.

“It's been an emotional roller coaster for the last 5 and a half years since Pete was diagnosed,” she told NBC Boston’s Jason Frazer.

The cost of her son’s homecare has been staggering. Nancy recalls her first conversation with doctors in 2012 shortly after her son’s diagnosis.

“The wheelchair cost $25,000… Then they tell you when he's in the throes of ALS and choose possibly to go on ventilator, it's going to cost a family between a $250,000-300,000 a year,” said Frates.

Pete was given a maximum of five years to live. But she credits the community’s support and her family’s decision to take care of her son at home with helping her son beat the odds.

“Pete has a two-and-a-half-year-old daughter he deserves to see as long as he can,” said Frates.

However, that decision to care for him at home has been expensive because insurance doesn’t cover for home care. It’s why her family is pushing Congress to change the law to require insurance companies to provide some level of coverage for home care.

“Quality of care directly correlates to longevity of life and we will not compromise Pete's quality of care,” Frates said.

Two weeks ago, the FDA approved the first effective treatment for ALS called Radicava.

Nancy says while the drug isn’t a cure, it does slow the progress of the brain disease. It means more patients like Pete will live longer increasing the costs for families and pushing the need for Congress to act.

“It's a very hopeful time,” Frates said.

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