A real ‘Fault in Our Stars’ couple fights red tape to survive

Posted at 2:42 PM, Apr 03, 2015
and last updated 2015-04-03 14:42:01-04

(CNN) — Late one night on Facebook, a girl with cystic fibrosis messaged a boy with cystic fibrosis, and both their lives were changed forever.

The girl, Katie Donovan, read that the boy, Dalton Prager, was very sick. “If you ever need a friend to talk to, you can reach out to me,” she wrote.

“Sorry, but do I know you?” he responded.

No, you don’t, Katie wrote back, and told Dalton a bit about herself. Like him, she was 18, and “my breathing is pretty crappy and I see you are in the hospital. I’m sorry. I know it sucks!…But you just gotta stay strong.”

Messages between the two flew back and forth, and three days later, Katie and Dalton decided they wanted to meet in person. But there was a problem.

They both knew that cystic fibrosis patients shouldn’t be near each other because they can share infections that could cripple their already fragile lungs. Dr. Michael Anstead at the University of Kentucky, Katie’s pulmonologist since she was a little girl, had lectured her many times that while social media connections were great, face-to-face meetings with other CF patients were a bad idea.

Over the phone, Dalton shared with Katie that he had Burkholderia cepacia, a horribly dangerous infection for people with CF.

“When we were deciding whether to meet up or not, I told Dalton I’d rather be happy — like really, really happy — for five years of my life and die sooner than be mediocre happy and live for twenty years,” Katie says. “That was definitely something I had to think about, but when you have those feelings, you just know.”

Love won. Katie visited Dalton in the hospital, and two years later they were married.

But Anstead’s fears were realized: just one month after meeting, Dalton had passed on his infection to Katie. A year after their wedding, both the Pragers had become too sick to work. Dalton quit his job at his family’s auto repair shop, and Katie quit hers as a store clerk.

Two years later, in August, 2014, the couple entered University of Pittsburgh Medical Center together to wait for new lungs. Dalton’s came first, and on November 17, he had his transplant. Despite his Burkholderia cepacia, which makes transplants more complicated, it was a success.

“I was so thrilled. I was so happy for him,” Katie says.

The month after Dalton’s surgery, UPMC discharged Katie — she says they told her it would be psychologically good for her to get out for a while. When she had serious trouble breathing three days later she tried to get back into the hospital, but UPMC informed her she’d used up her supply of Medicare days and wouldn’t accept her.

Medicare — the federal insurance program for the elderly and for anyone with disabilities — wouldn’t pay for another hospitalization until Katie had been out of the hospital for sixty days. But Katie was too sick to stay out of the hospital for six days, much less sixty.

So Katie relied on Medicaid, public insurance that was supplied by her home state of Kentucky. She was admitted to the University of Kentucky Hospital, where she was cared for by her beloved pulmonologist, Anstead.

But then, another hurdle. Anstead explained that most lung transplant centers, including the two in Kentucky, don’t do transplants on patients with Burkholderia cepacia, referring them to larger centers like UPMC that have more experience with such complicated cases.

Katie and Dalton, now 24 and 23, were desperate. Her doctors predicted she wouldn’t live a year without new lungs.

In February, Anstead wrote a letter to Medicaid, pleading with them to make an exception and pay for care at UPMC, even though it was out of state.

Kentucky Medicaid denied his plea, and that’s when the squabbling began.

In a statement to CNN, a spokeswoman for the Kentucky Cabinet for Health and Family Services pointed the finger at UPMC, saying the medical center had declined to enroll as a Kentucky Medicaid provider.

“Medicaid policies allow for a simplified enrollment process for out-of-state providers in such situations,” wrote the spokeswoman, Gwenda Bond. “Should UPMC reverse its decision and choose to enroll as a Kentucky Medicaid provider, the Department for Medicaid Services…will be happy to expedite their application.”

UPMC counters that Kentucky Medicaid told them that if they want to care for Katie, they would have to sign up hundreds of their doctors to accept Kentucky Medicaid patients. While UPMC spokeswoman Wendy Zellner didn’t elaborate, a hospital might be loathe to sign up for large-scale coverage of out-of-state Medicaid patients as payments under such programs are usually very low.

Asking for hundreds of doctors to sign up to take Kentucky Medicaid is “an unusually restrictive approach and contrary to single-case agreements that we have signed with other state Medicaid programs,” Zellner wrote. “UPMC wants to help Katie, and our physicians and staff have done everything possible to make that happen…It is up to Kentucky Medicaid to address this situation.”

Aaron Albright, a spokesman for Medicare, told CNN that caseworkers were asked to reach out to Katie immediately.

Today, Katie waits in limbo in her hospital bed, hoping that the three parties — Medicare, Medicaid, and UPMC — will work things out so she can get her new lungs.

“I feel like they’re putting a dollar sign on my life,” she says. “I don’t want to die because of money. That’s stupid. Nobody should have to do that.”

If Katie doesn’t get her transplant, not only will she die, but she’ll never be near her husband again because of the risk that she could give him her infection, which could be deadly for him as he’s on drugs to suppress his immune system.

She tries to stay strong, just as she advised her husband to do nearly six years ago in their first Facebook conversation. Skyping with Dalton helps, and so does thinking about their “after transplant bucket list” — going on their first vacation by themselves and starting a family. But really her most basic desires are much simpler.

“I just want to make it to see our four year anniversary in July and be able to hold hands and just hug. That’s all I really want — to be able to hug my husband on our fourth anniversary,” she says.

Wednesday afternoon, there were signs of hope. Zeller, the UPMC spokeswoman, sent an email to CNN.

“Ky Medicaid has reached out to us to talk. So stay tuned,” she wrote.