‘I need it the most’

Shortly after he was laid off last November, the 42-year-old Middletown man lost not only his medical benefits, but also his health. He suffers from severe physical symptoms that may indicate multiple sclerosis, but he can’t afford the specialists or the testing that could diagnose his condition.

Johnson can barely walk, let alone run jackhammers in the stifling heat, as he did during his most recent job as a subcontractor for AK Steel.

“I’ve always had insurance, but now that I need it the most, I can’t get it,” he said.

Johnson hopes to purchase insurance through the Affordable Care Act, but so far, he finds the government website, HealthCare.gov., confusing. “It’s overwhelming,” he said. “I don’t know where to go, or how to get any help.”

His unemployment runs out in December, and, he said, “I’ll have to jump through hoops to get insurance.”

Johnson lives in a bustling household with a large extended family including his ex-wife, Angela Johnson, their children, and his mother-in-law, Sue Shields. Even though he’s not working, he can’t help out much around the house. “I can’t even mow the lawn,” he said. “I can’t stand on my feet for that long.”

His life has changed completely since he stopped working. He began experiencing shortness of breath and slurred speech, as well as painful eyes and continual tearing. “My whole life has changed,” Johnson said. “I can’t walk or stand without the danger of triggering an episode, with severe cramping, or shaking continuously.”

Angela, who has lupus, is covered through CareSource; his mother-in-law has Medicare. He’s the only one who’s uninsured. “I’m sitting on the outside looking in,” Johnson said.

Even if he were able to work, he’d likely be negotiating an ACA marketplace exchange. “Insurance isn’t even on the table for most construction jobs any more, with construction work being seasonal,” Johnson said. “And who has $400 a month to pay for COBRA?”

Johnson’s father had multiple sclerosis, and in many ways he fears the diagnosis after seeing what his father went through. But it would be a relief to find answers and to get treatment, at last, after nearly a year in the limbo of the uninsured.

“It would ease my mind to know I can get treated and not worry about where I can come up with the money,” he said. “Right now, I can’t move forward.”