Man with Lou Gehrig’s disease makes emotional plea to Jeff Flake to vote down Trump’s tax plan

"What should I tell my son or what should you tell my son if you pass this bill and he cuts funding for disability and I can’t get a ventilator?"

In this March 9, 2016, file photo, Sen. Jeff Flake, R-Ariz., on Capitol Hill in Washington. CREDIT: AP Photo/Andrew Harnik, File
In this March 9, 2016, file photo, Sen. Jeff Flake, R-Ariz., on Capitol Hill in Washington. CREDIT: AP Photo/Andrew Harnik, File

One of Sen. Jeff Flake (R-AZ)’s last major votes before retirement could be a death sentence for tens of thousands of Americans. One of them is Ady Barkan, a 33-year-old California father living with amyotrophic lateral sclerosis (ALS), who, during a Thursday night flight from Washington D.C. to Phoenix, Arizona, asked Flake to cast a vote to save his life.

“I was healthy a year ago. I was running on the beach,” Barkan told Flake on the flight, according to video footage of the exchange. “I’m 33, I have an 18-month-old son, and out of nowhere I was diagnosed with ALS, which has a life expectancy of three to four years, no treatment, no cure.”

Due to his ALS, Barkan will probably need the assistance of a ventilator to stay alive long enough to see his son grow up. But the Republican tax bill, which recently passed the Senate, could result in major cuts to disability funding that will be necessary for Barkan to afford the medical assistance he’ll need as the disease progresses.

That’s because the GOP tax bill could potentially result in $150 billion a year in automatic cuts to safety net programs, including Medicare, student loans, farm subsidies, and support services for crime victims. These cuts may be triggered by the congressional “pay-as-you-go” (PAYGO) rule, which requires Congress to offset the cost of any legislation or trigger cuts to federal programs.


If those cuts — including a $25 billion per year cut to Medicaid — go into effect, Barkan says he would not be able to afford a ventilator.

“Mick Mulvaney of the Office of Management and Budget is individually responsible for choosing and implementing those cuts,” Barkan said during his conversation with Flake. “He thinks people on disability are just slackers, so what happens? What should I tell my son or what should you tell my son if you pass this bill and he cuts funding for disability and I can’t get a ventilator?”

Barkan, who works for the advocacy nonprofit The Center for Popular Democracy, told ThinkProgress in an interview Friday that he was flying back to the west coast after coming to D.C. to protest the tax bill, which has now passed both the Senate and the House. The plan overwhelmingly favors the wealthy and does not deliver on promises to cut taxes for the middle class. The Senate’s version also allows for drilling in the Arctic National Wildlife Refuge and strains funding on public schools.


The chambers now must reconcile their versions of the tax bill and vote it up or down before it will go to the president’s desk. The legislation passed by just two votes in the Senate — and Barkan’s not giving up yet.

“Think about the legacy that you will have for my son and your grandchildren if you take your principles and turn them into votes,” Barkan said on the plane, referencing Flake’s emotional retirement speech in which he decried President Trump and the establishment that has decided to support him.

“You can save my life. Please,” Barkan told Flake. “Please remember this conversation.”

Flake, who stood near Barkan’s seat to listen to his impassioned speech, responded, “You’ve very up on everything.”


“My life depends on it,” Barkan said, adding, “For the rest of your life, you will be proud if you vote this bill down. You will be proud on your deathbed, I promise you.”

Barkan, who ended up speaking with Flake on the plane for more than 10 minutes, also raised the Deferred Action for Childhood Arrivals (DACA) program, the Children’s Health Insurance Program, and Flake’s relationship with the White House.

On Twitter, Flake said he enjoyed his conversation with Barkan, adding, “We won’t always agree, [but] I admire your courage and knowledgeable advocacy.”

At any rate, Barkan isn’t giving up hope. For now, he’s still able to work, but within a year or two, he said, he’s going to have to stop working and will then rely on the Medicare program to keep him alive for as long as possible.

Barkan is hardly the only American whose life very literally hangs in the balance.

In addition to the PAYGO rule, the GOP plan also repeals the Affordable Care Act’s individual mandate, which the Congressional Budget Office (CBO) estimates could leave an additional 13 million people without health insurance.

Even the most conservative analyses estimate that, for every 1,000 people who loses their insurance, one of them will die. That conservative estimate concludes that 10,000 people will die every year because of the GOP tax plan. (The most liberal estimate assumes that the number is closer to one in 176 people will die due to losing their access to health coverage.)

Flake and Sen. Susan Collins (R-ME) are considered the swing votes on the bill, and both of the Republicans were convinced only after promises from Senate Leadership and the Trump administration. Before the vote, Flake said he secured a commitment from leadership and the administration on a plan for DACA, which grants 800,000 young immigrants in the U.S. relief from deportation and work authorization and was recently rescinded with a six-month delay.

Collins only voted in favor of the bill after she said she got a promise from Senate Majority Leader Mitch McConnell that he would pass two bills that aim to stabilize the Obamacare markets in an effort to offset the effects of repealing the mandate.

But both senators have began to see their promises unravel.

Despite Flake’s claim that he got a “firm commitment,” PBS NewsHour reported shortly before the vote that White House aide Marc Short said the only thing Flake had secured regarding DACA was to be included in the conversation. Additionally, House Speaker Paul Ryan has made it clear he is not bound by the health care promise McConnell made to Collins.

Collins told local media Thursday evening that she was going to wait to see the final bill before she committed her vote.

And in Alabama, a race to fill the Senate seat vacated by Attorney General Jeff Sessions could have important implication for the tax plan’s future. Nine women have accused Republican candidate Roy Moore of sexual misconduct, including one woman who was just 14 years old when the alleged incident occurred; Moore was 32.

Polling in the Senate election shows a close race. Most pollsters have Moore up by single digits ahead of Democratic candidate Doug Jones.

But Barkan hopes he can count on Flake. On Friday morning, Barkan told ThinkProgress he felt like the senator agreed with much of what he said and was moved by his plea.

“He seemed moved or… impacted by it, but, you know, I did not find his arguments convincing,” Barkan said. “But I think there’s still time for him to make the right decision.”