Looking Back: Denied
April 17, 2023 • Written by Julie Winokur / Photos by Ed Kashi
One thing about documentary work: It’s a compulsion, not a job. Throughout my career I have been pulled by the grip of people who, by force of circumstance, find themselves on the raw end of the social experiment we call modern life. They have been deprived of a fair chance because the world simply isn’t fair and equity is a mythological promise. These are the people who occupy a sidecar to my waking hours and compel me to tell stories.
Twenty years ago, Sheila Wessenberg was that person. She suffered from breast cancer, and when her husband lost his job, she lost her insurance. Her doctor refused to continue treating her and she began panhandling to help feed her family. Standing at a busy intersection in Dallas, she held a large coffee can that read: I am not a bum. I’m a mom. Please help. Sheila and Bob had done everything they were ‘supposed to do’ to occupy a solid middle class existence. But then who prepares for an economic downturn or cancer? They got hit with both simultaneously.
Sheila sparked a tinder box inside me. Her house was burning and I knew I could use my powers of communication as a firehose.
Sheila sparked a tinder box inside me. Her house was burning and I knew I could use my powers of communication as a firehose.
I met Sheila when a colleague at The Robert Wood Johnson Foundation asked me to produce a project on uninsured Americans, who numbered 41 million at the time. The result, Denied, originated with a book chronicling one story for each million disenfranchised souls. They ranged from a hairstylist who couldn’t afford insurance and was forced to allow a brain tumor to grow until she qualified for emergency surgery, to a young invincible who didn’t think he needed insurance until he got hit by a bus while exiting a taxi. With a sense of the macabre, I avoided the people I called the ‘worried well’—people who were concerned about getting sick but who hadn’t lapsed yet—in favor of those for whom being uninsured led to catastrophic outcomes. Sadly, there were legions of them.
Sheila was my North Star, guiding me with intense purpose. I became consumed with the cruelty of a society that allowed 15,000 people to die each year because they lacked access to insurance. When we published Sheila’s story in The New York Times Magazine, the family received $50,000 in unsolicited donations, which helped feed them and pay their mortgage for close to a year. The story even helped Sheila secure an oncologist who agreed to treat her free of charge.
The outpouring was overwhelming and humbling. I and many others wanted to save Sheila, but we were busy trying to heal the person rather than fix the problem. There were millions more Sheilas who wouldn’t be plucked from the abyss by a New York Times profile.
I and many others wanted to save Sheila, but we were busy trying to heal the person rather than fix the problem. There were millions more Sheilas who wouldn’t be plucked from the abyss by a New York Times profile.
This experience taught me that I needed to become more strategic in how to present our media and how to activate people to address the root causes of suffering rather than the symptoms. I have carried that lesson forward through all of our work.
I was relieved when the Affordable Care Act— Obamacare—passed despite its imperfections. To be a civilized society means to care for the most vulnerable members of society. The ACA has survived scores of legal challenges, and just last week, North Carolina became the latest state to expand Medicaid coverage. While Sheila’s story feels like a lifetime ago, lack of access to healthcare persists for millions of Americans, and insurance companies continue to deny legitimate claims. A recent ProPublica exposé outed Cigna for denying claims without even reviewing patient records.
When Sheila’s cancer metastasized to her liver about a year after we met, I filmed her surgery, which proved to be too little too late. I shared her story extensively, including at a gathering of the American Medical Association, which historically had rejected health care reform. Her story was exhibited at Union Station and the Empire State Building, as well as 20 state capitals across the country.
Sheila’s death seemed inevitable from the moment I met her, but she wasn’t going down quietly. Like protesters who light themselves on fire, Sheila was an effigy whose flames were impossible to ignore. To this day, she compels me on a righteous path to use the tools I know to fight the battles that call me.
WATCH DENIED: CRISIS OF THE UNINSURED ↓