Terminal Cancer Patient at Center of Health Insurance Nightmare

Feb. 5, 2014— -- Health insurance is the last thing John Oberg wants to be dealing with during what may be the final months of his mother’s life, but he can’t seem to get a straight answer about why coverage for chemotherapy at her usual hospital suddenly stopped.

His mother, Karen Oberg, 59, had been receiving treatment for her terminal stage IV lung cancer at the University of Michigan Health System, but the night before her latest appointment on Jan. 20, John Oberg says he got some bad news: the insurance company called the hospital to say it would no longer pay for his mother’s care.

“It’s absurd because my mom is literally in the middle of treatment,” John Oberg told ABCNews.com. “She’s been seeing the doctors at University of Michigan for seven months now. This is the only place she feels comfortable.”

Karen Oberg's treatment has become tangled up in bureaucratic gridlock that dozens of phone calls and a Change.org petition with 181,000 signatures have been unable to break down.

John Oberg , 26, took a leave from his job and moved back home to suburban Detroit to take care of his mother last year. He cooks and cleans for her, and never misses a doctor’s appointment. When their health insurance crisis started, he immediately got on the phone to resolve it, but the results have been frustrating, he said.

"He’s taken the bull by the horns and just charged through,” Karen Oberg said, adding that her son made 48 calls in a single day so that she can continue her outpatient care at her hospital. “I don’t have to ask him to do anything. He just steps forward.”

Karen Oberg is insured by Total Health Care through Medicaid, John Oberg said. According to University of Michigan Health System spokeswoman Nicole Fawcett, Total Health Care had been paying for Karen Oberg’s treatment despite the fact that the hospital was out of network.

“Karen’s care at U-M has been covered by Total Health Care since she first came here for a second opinion,” Fawcett told ABCNews.com in an email. “Total Health Care informed us that they would no longer continue to authorize coverage. We do not know the reason. We are currently working with them to try to restore the authorization.”

They started going to the University of Michigan hospital last spring after doctors at another hospital misdiagnosed Karen Oberg’s hip pain and told her she had some broken bones, Karen Oberg said. The University of Michigan doctors realized there were tumors on her hip, and her cancer was more advanced than once thought, she said. She's felt safest with them ever since, she said. She began her chemotherapy there in October.

John Oberg said when he reached out to Total Health Care’s chief clinical officer Linda Alexander, she insisted she never denied coverage. Nevertheless, he says she told him his mother would have to switch hospitals anyway.

At a loss, he started a petition on Change.org to persuade the insurance company to continue covering his mother at the University of Michigan Health System. More than 178,000 people signed it so far.

“I was just thrilled just watching the signatures go up,” Karen Oberg said. “It was unbelievable --still is --that there’s that many people that would take the time, the effort for me is unbelievable.”

When ABCNews.com called Alexander about the Oberg case, she said she could not go into specifics because Karen Oberg hadn’t signed a “release of information” form.