“No One Else Can Do This”: Ady Barkan Is Using the Health Care Fight to Tip the

It was mid-September 2019—the thick of the Democratic presidential primary. Pete Buttigieg had just touched down in Santa Barbara, California. The former mayor of South Bend, Indiana, was scheduled to speak with Ady Barkan, the progressive activist diagnosed with amyotrophic lateral sclerosis (ALS) weeks before Donald Trump won the presidency in 2016. This cycle Barkan was endeavoring to discuss health care policy with every Democratic presidential hopeful. But before he and Buttigieg could meet, Barkan’s team called. They had to cancel. Barkan had woken up that morning exhausted and struggling to breathe. He was rushed to the emergency room. There, he and his wife, Rachael King, decided to move forward with a tracheotomy, a procedure where a plastic tube is inserted into one’s throat so a ventilator can be hooked directly to their lungs. The interviews were put on hold—possibly indefinitely—as Barkan awaited surgery. But when he woke up, he insisted they resume. 

Inside the Buttigieg camp, there was no question as to whether they would reschedule—even if an endorsement from the progressive Barkan wasn’t on the table. “We thought it was absolutely critical to engage with Mr. Barkan because this conversation is so critical. These are conversations that every American family at some stage, at some point, is having…Ady is the embodiment of that,” said Nina Smith, who served as Buttigieg’s traveling press secretary during the primary and was with him in Santa Barbara. “We definitely thought that what Ady was doing was sparking the type of conversation that we wanted to be a part of and an important conversation for the country broadly.”

Barkan’s intent with the interviews, which were compiled into a video series called Uncovered, was to engage the candidates in a real, candid conversation. “When you’re asked by a dying person about health care, giving the standard messaging [and] talking points is probably the most hollow and empty a politician could look,” said Julia Barnes, executive director of Be a Hero, the PAC cofounded by Barkan and democratic strategist Liz Jaff. “Ady knows that, and we all know that. So getting in there and asking questions about Big Pharma and ‘Medicare for all,’ and their own personal health care connections, allowed us to pull out some of the most personal and also the most honest content around the health care discussion that was had during the presidential primary.”

The bigger Barkan’s platform gets, the harder it will be for politicians to ignore him. Though his roots in progressive activism were planted long before his diagnosis—a graduate of Columbia University and Yale Law School, Barkan first drew national attention for his work on the 2014 Fed Up movement—he has emerged as one of the most prominent “Medicare for all” advocates in the country, in part because his fight to reshape health care policy and the fight for his life are synonymous. Displays of…