Ady Barkan did not 'go quietly': death of a documentary star trying to revolutionize US healthcare

Healthcare activist Ady Barkan has passed away at age 39. We know all about Barkan’s story thanks to the 2021 documentary ‘Not Going Quietly’ which followed his struggles. Barkan died from ALS (a motor neuron disease) complications.

ALS deteriorates the nervous system, causing muscle weakness and respiratory problems, targeting nerve cells in the spinal cord and brain. The diagnosis of this disease is a bleak one, with an average of three to five years survival rate.

‘Hi all, this is Ady’s wife, Rachael,’ began the announcement. Rachael Scarborough King broke the news on X, formerly Twitter.

‘I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly, he was a wonderful dad and my life partner for 18 years,’ the heartfelt post read.

‘Ady fought for the 24/7 care he needed to be home with us until the end of his life. It’s impossible to thank his incredible caregivers enough for their labor and care, which allowed us to live as a family through Ady’s health challenges. Everyone should have that chance.’

The film documentary followed Barkan on a national campaign to reform healthcare in the USA. He highlighted the need for a better healthcare system that would allow those suffering with serious illness to get the help they need.

The documentary showed the need for change and reform, whilst also shedding light on this disease. 'Not Going Quietly' won awards including the Special Jury Award for Humanity in Social Action at South by Southwest and The Cinema for Peace Award for The Political Film of the Year. Many who watched it were touched by his story and his life was celebrated on social media.

“I knew that US healthcare was broken before my diagnosis, but having a serious illness clarified the cruelty of our profit-driven system,” Barkan wrote, according to the Guardian.

After being diagnosed in 2016 at the age of 32, Barkan’s health insurer refused to pay for essential medical resources, such as a ventilator and an ALS drug approved by the FDA. To cover his 24-hour care, he took the insurer to court and was aided by his friends who partially funded his care.

“It shouldn’t take a team of lawyers, an experienced activist, and the generosity of friends and strangers to get the healthcare you need to survive,” Barkan wrote.
Barkan was paralyzed and required a ventilator machine to eat, speak, and breathe.

‘Thank you to everyone who has supported Ady and our family over the years—from the amazing caregivers who became family to us to the activists facing their own health challenges who joined the movement he was building @BeAHero,’ his wife concluded on X.

Actor Jamie Lee Curtis took to Instagram to share Barkan’s incredible achievements. ‘He swung WIDE and FAR and made the world a BETTER PLACE! @adybarkan,’ she wrote alongside a photo of the activist.

Another to celebrate his incredible achievements was Jamila Headley, the co-lead at Be a Hero who said Ady became ‘a real-life hero to millions of people navigating their own health challenges and all the failures of America’s healthcare system that stood in the way of them getting the care they need.’

Photo shows President Biden signing the ACT for ALS Act authorising $100 million annually through 2026 for research and investigational therapies for rare neurodegenerative and terminal diseases like amyotrophic lateral sclerosis.

She continued by cementing the fact that his legacy will live on. ‘He inspired many of us to join the fight for universal access to life-saving and life-giving healthcare.’ RIP Ady Barkan.