Six years ago, I was a healthy, 32-year-old lawyer at the peak of my career fighting for economic and racial justice. My wife, Rachael, and I had just brought our chubby, happy newborn home to Santa Barbara, California. We could see decades of happiness stretching out before us. And then overnight, I was handed a death sentence. I was diagnosed with motor neurone disease, which we call ALS in the US, a fatal neurological illness that destroys the nerve cells that control voluntary muscle movement. I was told I had three to four years left to live.
Today I am nearly completely paralysed and am typing these words using computer technology that follows the movement of my eyes. I can no longer eat, speak, or breathe on my own, and am hooked up to a ventilator 24 hours a day. I rely on a team of caregivers that work around the clock to keep me alive.
I knew that US healthcare was broken before my diagnosis, but having a serious illness clarified the cruelty of our profit-driven system. ALS is a progressive, degenerative disease that puts into perspective how time is the most valuable resource we have. And yet, so much of that early precious time was wasted on the phone with my health insurance company, navigating the infuriating bureaucracies set up to deny us care. My insurance denied me a ventilator, stating that it was experimental. Two weeks after that, they rejected access to an FDA-approved ALS drug.
The years I have spent fighting for health justice since then have shown me that although my story is tragic, it is not uncommon. In 2018 the US spent 16.9% of its GDP on healthcare, nearly double what the UK spent, with significantly worse outcomes. More than 28 million Americans are uninsured, and even among those insured, many cannot afford to access their healthcare due to high out-of-pocket costs. As of June 2020, 58 million people owed more than $140bn in medical debt, with debt expected to continue to climb due to the pandemic. Eighteen million Americans struggle to pay for medically necessary prescription drugs, with one in 10 Americans skipping doses to save money.
Even good health insurance, which I have, does not cover the full cost of the care I need. Paying out-of-pocket for home care would have left my family bankrupt. I am only able to afford these essential services because I successfully sued my health insurance company in federal court, and because some generous friends pay for part of my 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. The reliance on crowdfunding to afford healthcare is a uniquely American tragedy. Data published in the Journal of the American Medical Association found that between 2010 and 2018, nearly 30% of all campaigns on the fundraising platform GoFundMe were for medical expenses, which amounts to $3.7bn dollars.
Despite increasing support from the public, guaranteed healthcare has remained elusive in the US. That’s because the corporations that profit from our suffering have spent dizzying amounts of money on anti-health reform campaigns and lobbying efforts to reinforce the status quo. According to reports compiled by the nonprofit consumer rights advocacy organisation, Public Citizen, since 2008, the pharmaceutical industry has spent $2.7bn on lobbying in Washington, contributing 44% to congressional Republicans and 56% to congressional Democrats.
It is high time that the US joins the rest of the industrialised world to guarantee healthcare for all. The creation of the NHS was a product of visionary, postwar reforms introduced by the 1942 Beveridge report, which called for state-provided social services. Its author, the economist William Beveridge, opposed the practice of means-testing, and argued for a single-payer system, run by the government and not by insurance companies. Though the Beveridge report popularised these ideals, the NHS, established in 1948, was the result of advocacy conducted in part by doctors, agitators and elected officials over decades, led by their shared belief that healthcare should be free for all, paid for by taxes, and provided to people based on need and not an ability to pay.
Healthcare is a basic human right. This fight for a more just society belongs to all of us and goes beyond borders. Being part of the movement for justice has given me purpose, a community, and the chance to nudge our society in the right direction. It’s allowed me to transcend my dying body and find personal liberation. The purpose I’ve found in this work is available to everyone who strives to guarantee dignity for all people. Human stories have the ability to unite people and bring new people into the movement for change. That’s why I tell my story. I hope you’ll join me.
• Not Going Quietly, a documentary about Ady Barkan’s life, will have its UK premiere at the Glasgow film festival on 9 March and open in UK cinemas on 18 March.
