Without Insurance, Survivor Navigates Colon Cancer With the Help of Others

If the doctors and American Cancer Society folks weren't there, I don't know how all of this would have turned out.

Steve Johnson
photo of Steve Johnson

Steve Johnson was near the finish line: the Chicago salesman had beaten back his stage 3 colon cancer. All the 48-year-old needed was one more surgery.

That’s when he lost his health insurance.

“I felt like the scarecrow in The Wizard of Oz,” Johnson says. “Were they going to be able to put me back together?”

Thanks to the American Cancer Society and doctors at his county hospital, Johnson got back on his yellow brick road. Now 52, Johnson is in remission, has health insurance again through a new job, and lives each day with a newfound trust of strangers. The father of two had feared a bleak battle with cancer, but prevailed with unexpected help when his health and finances were at their worst.

“If the doctors and American Cancer Society folks weren’t there, I don’t know how all of this would have turned out,” he says.

Health care in a time of need

Johnson’s journey began in 2007, when he drove to the hospital expecting a quick fix for pain in his left side. He even planned to pick up ribs on the way home for the family’s traditional Fourth of July barbecue.

But this would be no in-and-out trip to the emergency room: doctors admitted Johnson, and two days later, the diehard Chicago Bears fan received the surprising news for someone with no family history of the disease. Not to mention someone so young.

“I never would have guessed that it was cancer, especially at my age,” Johnson says.

Surgeons removed two and a half feet of his large intestine. Nine months later, he lost his insurance. Johnson had been covered through KidCare, the state-funded program in Illinois for children 18 and under, as well as uninsured parents who live with the child. The insurance kept Johnson afloat—until his daughter turned 19.

KidCare had covered Johnson through his initial surgery and colostomy, when doctors created an opening in his abdominal wall that allowed stool to drain from one end of his large intestine into a bag. It even covered a combination of anti-cancer drugs he received after the surgery. But his daughter’s birthday arrived before doctors could reattach the ends of his colon.

“I had no insurance and I still had this bag on my stomach,” Johnson says.

With no coverage or savings to dig into, Johnson turned to John H. Stroger Jr. Hospital of Cook County. Falling back on Chicago’s largest public hospital turned out to be a blessing. In early 2009, doctors at Stroger Hospital completed his treatment. “For these people to be going through the expense that they went through for me was just totally amazing.”

The kindness of strangers

Even though he “sometimes felt like a mooch,” Johnson says the most important thing he learned was to trust in people whom he never met.

Back when he was diagnosed, one of Johnson’s first calls was to the American Cancer Society. “It’s funny because I don’t know the person on the other end of the phone. It’s just a very calm, pleasant voice and they listen to me. People don’t know what that means to someone in a situation like this.”

They sent him information about his disease, a guide on questions to ask his doctor, and answered every question he threw at them. He also took advantage of the ACS patient navigation service at Stroger Hospital. “I was in a financial state of ruin and (the navigators) guided me and told me where to go to find assistance.”

The patient navigators gave him bus passes to make the hospital trip, he says. And after falling behind on rent, they pointed him to state and federal financial resources that allowed his family to stay in their home.

‘Back in the life’

Now in remission, “I’m back in the life, so to speak,” he says. Earlier this year, Johnson started a new job—one that offers health insurance. And his pizza-for-breakfast diet has been replaced with a healthier selection. “In the last two years, I think I’ve eaten more fruits and vegetables than I’ve eaten in my whole life.”

Next on his to-do list is to master the cancer survivor strut at a future Relay For Life. “I want to stick my chest out and show everyone that you can battle back and win.”

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

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