This Dad With ALS Doesn't Know How Long He Has Left. But He Wants To Make It Count.

"I can’t think of a better way to spend my last days than to show these politicians that their votes have real consequences."

Ohad "Ady" Barkan knows his days are numbered, so he's using them to fight for more affordable health care in America.

Shortly after the birth of his son, in October of 2016, the 34-year-old Yale Law School graduate was diagnosed with amyotrophic lateral sclerosis (ALS), which is also known as Lou Gehrig's disease. Given a life expectancy of two to five years, Barkan is now traveling cross-country in an RV on a Summer of Heroes Tour where he is "challenging" Republican members of Congress to become heroes by fighting for affordable, accessible health care. 


"The healthcare industry has become a business that does not work for the sick and weakest members in our society—the people who it is supposed to benefit," Barkan said in an email to A Plus. "Our healthcare system is profit-making machine that is disincentivized to provide actual care, and I have experienced this as well as many other Americans."

Barkan first made national news last year when he confronted Republican Senator Jeff Flake on an airplane about his vote for the tax bill, which repealed the Affordable Care Act's individual mandate. Now, motivated by the opportunity to make a better future for his son, he's traveling to 20 states, 30 Congressional districts and going to over 80 events where he'll be speaking with senior citizens, low-income Americans and sitting politicians. The trip has been challenging at times, in part because Barkan's ALS is advanced enough that simple things like showering, getting a quick bite to eat and getting enough rest are a lot more difficult. 

Still, he's managed to connect with notable activists who will join him along the way like Shaun King, Jason Kandor, Alyssa Milano, Jon Favreau and Linda Sarsour.

"The Affordable Care Act (ACA) helped provide some relief, but recent efforts by Republicans in Congress to repeal it are compounding the situation," Barkan said. "We have a healthcare system that doesn't work for the sick, and politicians who are beholden to it and will not stand up for the vulnerable — putting profits, tax breaks, and campaign donations ahead of the people."

Earlier this month, Barkan filed a lawsuit against Health Net, one of the largest insurance providers in America. Barkan is alleging that the insurer denied coverage for a ventilator he needs to breathe. His lawsuit comes after a successful appeal to the insurer's denial, which he believes only happened because of his notoriety as a health care advocate. 

Barkan, who is an employee for the liberal group Center for Popular Democracy, alleges that Health Net "employed a system of denials and delays designed to deprive consumers like me of the care they need and have been promised—representing a breach of contract and a direct affront to the Affordable Care Act (ACA) mandated essential health care benefits."

"Health Net's policies and the Health Insurance Portability and Accountability Act (HIPAA) dictate that the privacy of our members comes first," a spokesperson for the insurer told A Plus in an email, noting that they could not comment further on pending litigation.

At the heart of Barkan's mission is a quest to create a world that he thinks will be brighter for his son. Both his wife and son joined him for the first week of the trip and will join him again for the final weeks. He knows he's missing valuable time with his son and is looking forward to getting home, but also thinks that he'll be leaving behind a legacy he can be proud of when Carl is an adult. Asked what he hopes his son knows about him and his work, Barkan didn't hesitate.

"Probably that I was devoted to a cause greater than myself," he said in a phone call with A Plus. "And that I was a compassionate person who cared about all the people in my community and my country."

Barkan fundamentally believes that health care is a human right, a common refrain from the most progressive wing of the Democratic party. Barkan points to Medicare for All option as the solution, a position that has become a litmus test for many Democrats running for office in 2018. He also cited Utah's Medicaid expansion initiative as an example of a state initiative that works.

While he's critical of the United States health care system, he also holds a surprising amount of optimism about the future. He said he is hopeful about the future because signs point to politicians embracing the more progressive wing of the Democratic party, which could mean turning Medicare for All into law.

"We are on this tour to take back our democracy," Barkan said.  "I can't think of a better way to spend my last days than to show these politicians that their votes have real consequences for people like me. If they can't Be A Hero for the American people, then Americans will rise up to be our own heroes and elect a government that we deserve."


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