Musician with ALS faces next challenge: health care reform

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Wed June 28, 2017

(CNN) Musician Jason Becker was diagnosed with amylotropic lateral sclerosis (ALS) before his 21st birthday and given no more than five years to live. That was in 1989; he’s now 47.

Once a guitarist for former Van Halen frontman David Lee Roth, Becker has continued to compose music since he was diagnosed with ALS, also known as Lou Gehrig’s disease, which took away his ability to move and breathe on his own.

But on Monday, he took to Facebook to speak out against another challenge he’s facing: the Senate health care bill.

I have survived ALS to continue my work as a musician and composer for 28 years due to the care I receive through insurance and Medicaid,” wrote Becker, the subject of the 2012 documentary “Jason Becker: Not Dead Yet.”

“Without these supports … my life and career will be in serious jeopardy,” he said.

Medicaid covers roughly two-fifths of Americans with disabilities and one-fifth of Americans overall. The latest iteration of the American Health Care Act would reduce federal Medicaid spending by $772 billion over the next decade, according to the Congressional Budget Office (PDF). In that same time frame, Medicaid would cover about 15 million fewer people.

“I would certainly be one of those affected,” Becker wrote on Facebook.

The Senate bill would roll back Medicaid expansion starting in 2021, giving states fixed amounts of federal funds. Some experts worry that this could incentivize states to avoid enrolling or providing comprehensive coverage to people who require more costly care.

Under the Senate bill, essential health benefits would no longer be protected. Becker said that he would rely on some of these basic services, such as hospitalization costs, to cover his care the next time he gets pneumonia, for example.

CNN has reached out to Becker for comment.

Becker lives in California, one of the 31 states that expanded Medicaid. These states may have the farthest to fall by limiting the federal Medicaid budget, experts say.

“Millions will lose health care coverage, while millionaires profit,” California Gov. Edmund G. Brown Jr. said in a statement when the bill was released last week. “The American people deserve better.”

Ultimately, Becker’s concerns that “people with costly needs like mine will be too expensive to cover” are held by a number in the disability community.

“To say people will die under this law is not an exaggeration,” Mike Oxford, an organizer for disability rights group ADAPT, said in a statement last week.

Oxford was one of several dozen members of ADAPT who were arrested last week during a protest against the Medicaid spending cuts outside Senate Majority Leader Mitch McConnell’s office.

Republicans who support the bill have argued that these limits on federal Medicaid spending are not a tax cut for the wealthy, as some experts have argued. Rather, they say it could strengthen the program.

“The proposal strengthens Medicaid, giving states the flexibility to implement healthcare programs that best meet their needs and levels the playing field between expansion and non-expansion states,” Sen. Orrin Hatch, a Republican from Utah, said in a statement last week.

“It further preserves coverage for children with disabilities and individuals with substance use disorders and mental illness. And, it does not touch Americans’ Medicare benefits,” he added.

Becker, who said on Facebook that he was “freaked out” by the Senate bill, urged readers to take action.

“Please call and email your senators right away, telling them you want them to stand up for those who can’t,” he wrote.

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