Santa Barbara Father With ALS Traveling Country to Advocate for Health Care - NBC Southern California

Santa Barbara Father With ALS Traveling Country to Advocate for Health Care

Ady Barkan was diagnosed with ALS in 2016. After necessities weren't covered by his insurance, he used social media to get his coverage back.

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    Santa Barbara Father With ALS Traveling Country to Advocate for Health Care
    Patricia Brooks
    Ady Barkan (left) and his lawyer Richard Collins (right) sued Health Net on June 29 2018.

    A Santa Barbara father is spending his last days suing his health care provider while traveling the country in a van to advocate for health care.

    Ady Barkan, 34, was diagnosed with ALS in 2016. Before his diagnosis, he was a healthy young man who regularly took runs down the California coast and was the proud father of a newborn named Carl. Now, Barkan is spending his final days advocating for the future he won't be able to see, and cementing his legacy.

    "As my life is coming to an end I want to make sure I am doing things everyday that make me proud, and that will make my son proud," Ady Barkan told NBC News in February 2018. "I hope that when people remember me, they will remember I was committed to a purpose far bigger than myself and that I encouraged them and inspired them to join that cause."

    In January 2018, Barkan switched over to his wife's health care provider, Health Net, in a bid to cut costs for his family. Health Net ruled that the ventilator and medicine provided to him by his neurologist was not necessary and Barkan would have to pay full price.

    "Because of the Patient Protection and Affordable Care Act, the transition between his health care should have been seamless," said Richard Collins, Barkan's lawyer. "It is important to include the 'Patient Protection' part of the Affordable Care Act because that's what it is supposed to do, protect people like Ady."

    However, Barkan is far from normal. Barkan has been a progressive activist for years, working as campaigner and organizer for the Center for Popular Democracy and graduating from Yale Law School.

    In December 2017, one chance encounter on a plane with Senator Jeff Flake went viral with Barkan pleading with the Republican senator that he could "save his life" if he voted no on the GOP tax bill.

    After the viral encounter, Barkan's following only grew, a fact he used to his advantage when protesting Health Net's decision to revoke coverage of his treatment.

    "If you are Ady Barkan then you take to Twitter with your thousands of followers and bring the attention to what happened," Collins said.

    Within days of Barkan speaking out, his treatment was covered by Health Net.

    "They were embarrassed by my tweets and article so they changed their decision very quickly," Barkan said. "But most people aren't professional activists like me. They don't organize protests regularly."

    Even though Barkan got his care reinstated, he still filed a lawsuit against Health Net June 29. The lawsuit claims the company had no statements in the insurance policy that would justify depriving coverage for an ALS patient who needs a ventilator, and medicine to cope with the symptoms. 

    Barkan took it one step further by going on the Be a Hero Tour to mobilize voters to advocate for Medicare and vote in the upcoming November elections. Barkan has met with elected officials, both Republican and Democrat, and has organized rallies and meet-and-greets in communities throughout the country.

    "I've heard from people in rural Iowa and downtown Detroit and the suburbs of Chicago," Barkan said. "Everywhere we go, people are mad and angry but they are also hopeful and brave. They want to better our health care and protect our democracy".

    Barkan also spoke at the Keep Families Together rally in Los Angeles at the start of the tour. The tour began July 1 in California and ends August 12 in Maine.

    However despite becoming the face of the Be a Hero tour, Barkan says his lawsuit and the tour are not about him at all.

    "It's not about me. I'm doing this whole road trip from California to Maine because everybody deserves health care," said Barkan. "I want them to understand the future in our hands, we control our destiny of this country and we can make our lives better and our country stronger if we pour our hearts into this election."

    Collins currently has three class-action lawsuits and 13 individual cases against Health Net pending on behalf of policyholders and health care providers. However Collins is currently rushing Barkan's case in hopes that Barkan will be able to see it go to court.

    "We are hoping Ady can get his day in court while he can still speak for himself and participate with us," Collins said.

    NBC4 reached out to Health Net, and while she said they were unable to comment on pending litigation, she released the following statement:

    "We take the concerns of our members seriously and, when complications arise, our team works diligently to gather the facts and resolve the matter in a timely fashion." 

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