Ady Barkan fights for healthcare for all amid struggle with ALS

Barkan can no longer walk and talk as a result of the disease, but he has become one of the loudest voices for Medicare for All. “I… just want my life and death to have meant something,” he said.
8:54 | 09/05/19

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Transcript for Ady Barkan fights for healthcare for all amid struggle with ALS
Every day, Ady hopes that what little time he has left to live will count for something. Fighting for justice gives me purpose. I much prefer to focus on the struggle for our democracy than to focus on als. Reporter: Als has already robbed him of his ability to walk and talk, play with his son, hold his wife's hand, but the deadly disease has also transformed him into one of the most influential voices for health care for all. Health care is a right. What does medicare for all mean to you? We all get high-quality, comprehensive health care with medicare, with no co-pays for premiums. It was a fringe idea, and now it enjoys the support of the majority of American people. A king maker for democratic presidential hopefuls. You know, Addy, I knew this was going to happen. Reporter: But Ady's fame started out as a fluke. On his way home after being arrested for protesting the tax bill he bumped into Arizona senator Jeff flake and pleaded with him to advance the bill. You can save my life. Please, please remember this conversation. Reporter: Flake eventually let him down, since his diagnosis at 32, he's grown physically weaker, but his political voice has grown even stronger. Health care is not treated as a human right in the united States of America. Reporter: Spearheading protests on capitol hill. I'm going to knock on your door. Reporter: Chasing down opposing politicians. Senator! I'm dying! Come on. Why are you running away from me? Reporter: Just one social media post raising more than $4 million to oust Republican senator Susan Collins. Paralyzed from the neck down at 35, Ady now communicates slowly with his eyes, so we had to send questions in advance. What are the hardest parts of als? 100 times every day I experience the inability to tickle and chase Carl, to comfort him in the middle of the night and scold him when he dumps his dinner plate for the fifth night in a row. Reporter: A lot of people are uncomfortable with a terminal illness. I am not shy about death. I just want my life and death to have meant something. Reporter: His wife Rachel fully embraces his life's mission, despite knowing the toll it takes on his failing body. When he got back last summer his voice was noticeably worse. We kind of lost that time when we could have been speaking more. Overall, it's given him so much strength. Reporter: It was just three years ago. The college sweet hearts had welcomed their baby boy Carl. After Yale law school, Ady was fighting for low-income workers' rights. She was teaching at uc Santa Barbara. I was thinking how could life get any better than this. Reporter: And when did the storm clouds approach? Ady had been having pain and weakness in his left hand. I was diagnosed with als today. Suddenly, we were wondering if Ady would see Carl go to kindergarten. Will Carl ever remember Ady and that sort of thing. Reporter: Earl eve on he admits he felt lost. What lit your fire again? When America elected a racist. They did more to undermine our democracy and social fabric. I decided I had to throw myself into the fight. I'm on the plane with Arizona senator Jeff flake. Reporter: It played out on social media with that viral video dubbed "Flakes on a plane". Let's see what happens when we get on the plane. Reporter: That voice, fellow passenger Liz. He the two had just met for the first time boarding the plane. Don't think you're supposed to be filming anything on the You can be an American hero. You really can. You're already there. You're halfway there. Think about, think about the legacy that you will have for your grandchildren. What we saw on the plane was a human interaction. I mean everybody on the plane was crying at the end of it. You can take my life. Please. Please remember this conversation. When Ady lands in Santa Barbara we are at a million views on this. Reporter: Within a couple hours. Within a couple hours. Reporter: An Obama staffer became his new partner in crime. And he said I think we should start a super pac and do it for the little people. Reporter: They named it be a hero, raising $2 million and supporting Democrats across the country during the 2018 midterm election. That's why Ady and I are asking you to vote for Katie hill on November 6. We cut ads. They were run in 100 districts. We won every race we placed our ads in. Reporter: Speaker Nancy Pelosi thanking him for helping them win back the house. Some observers would say that you're exploiting. Yeah. Reporter: His disease. Absolutely. Reporter: For political gain. Absolutely, because if the only way that we're going to force people to talk about these issues is with Ady, that he has to be this sick for people to pay attention, we're going to do it. I would give anything to be a happy father and husband. This is not exploitation. We have to tell our human stories if we want our democracy to be responsive to us as individual human beings. Reporter: Those personal stories front and center in his new show "Uncovered." Only Sanders and Warren support medicare for all. Hey! Reporter: And yet all the major democratic candidates, except for former vice president Biden have agreed to sit down with Ady. I know that your father had Parkinson's disease. I recently read an article where you opened up about your mother's death. Reporter: Turning a policy debate into a shared human experience. Kamala Harris is so strong and she broke down talking about her mother. You have written that the diagnosis of your mother was one of the worst days of your life. Elizabeth Warren also broke down. Cory booker, Julian Castro. You should see the candidates when they realize these are the people they're protecting. Reporter: Why did you want to create a show like "Uncovered". As I watched the first presidential debates, I found myself really frustrated. The conversation the country saw was little more than a bunch of shouted 30-second sound bites. I thought people deserved better. Reporter: Ady's crusade has a sense of urgency. Two days after our interview, he was rushed to the hospital. I think he can keep fighting. I think you can keep going and have a meaningful life. Reporter: Ady details that meaningful life in his new book. "Eyes to the wind". Part political manifesto, part personal memoir in which the best chapter still lies ahead. Reporter: Are you ready for another baby? I'm super jazzed. It's going to be great. Our lives are so crazy now. With a toddler and als, another baby will be a piece of cake. Reporter: His daughter is due this November. But, in his fragile state, next November, election day 2020 is far from guaranteed. It's so hard to think about Ady not being here. I can so vividly picture what our life would be like if Ady didn't have als. Reporter: What's the legacy you want to leave behind. At the end of the day, I want to be remembered as someone who fought to make the world a little more fair and just for all and most of all I want Carl and his sister to be proud of me. Reporter: Our thanks to Ady and his family. His book "Eyes to the wind" comes out next Tuesday.

This transcript has been automatically generated and may not be 100% accurate.

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