A 24-year-old Kentucky woman with cystic fibrosis who needs a lung transplant to live is caught in the middle of a financial and policy battle among Medicare, Medicaid, a state agency and the University of Pittsburgh Medical Center, one of only two hospitals in the United States qualified to do lung transplants on patients with her specialized condition.
|Prager at University of Kentucky hospital (Image from CNN)
“I feel like they’re putting a dollar sign on my life,” Katie Prager of Ewing, in Fleming County, told CNN. “I don’t want to die because of money. That’s stupid. Nobody should have to do that.” Katie’s story was first reported by The Ledger Independent of Maysville and excerpted in Kentucky Health News.
Katie longs to be with her husband, Dalton Prager, but can’t until she gets her lung transplant because in addition to cystic fibrosis, she has an infection, Burkholderia cepacia, that is “horribly dangerous” to him, Elizabeth Cohen and John Bonifield report for CNN. Dalton, who also has cystic fibrosis, received his lung transplants Nov. 17 at the Pittsburgh hospital, and the immunity-suppressing drugs he takes for the transplants make him highly vulnerable to infection.
“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,” Katie told CNN.
Katie and Dalton met on Facebook in 2009 when they were 18 and Dalton lived in Missouri and Katie in Kentucky. And though Katie’s doctors had warned her many times that it was dangerous to be around other CF patients because of the risk of shared infections, Katie decided to meet Dalton, even after he had told her he had Burkholderia cepacia, CNN reports. They married two years later.
|Photo from CNN
“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 20 years,” she told CNN. “That was definitely something I had to think about, but when you have those feelings, you just know.”
Their health “quickly deteriorated, and within months, they went on oxygen full time” and had to quit work, CNN reports. They entered the Pittsburgh hospital together in August 2014 to wait for new lungs. Dalton got his in November; Katie is still waiting.
One month after Dalton got his transplants, UPMC discharged Katie because they told her “It would be psychologically good for her to get out for a while,” she told CNN. After only three days out she began to have “serious trouble breathing” and tried to go back into the hospital, but was told she could not return because “she had used up her supply of Medicare days.”
Medicare wouldn’t pay for another hospitalization until Katie had been out of the hospital for 60 days. She is too sick to do that, and has since been a patient at the University of Kentucky, where she relies on the federal-state Medicaid program for the poor and disabled to pay for her care, and doctors have predicted that she won’t live a year without new lungs, CNN reports.
Medicaid cannot pay the Pittsburgh hospital because it is not in the state’s network of health-care providers. CNN reports that Katie’s doctor wrote a letter to Medicaid begging them to make an exception, but the state denied his plea. In a statement to CNN, a spokeswoman for the state Cabinet for Health and Family Services said the hospital 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,” Gwenda Bond, spokeswoman for the cabinet wrote, offering to expedite their application when they choose to sign up.
Hospital officials counter that Kentucky officials said they would have to “sign up hundreds of their doctors to accept Kentucky Medicaid patients,” which hospital spokeswoman Wendy Zellner said is “an unusually restrictive approach and contrary to single-case agreements that we have signed with other state Medicaid programs. . . . It is up to Kentucky Medicaid to address this situation.”
Katie has also since had a discussion with a federal Centers for Medicare and Medicaid Services caseworker that “didn’t go very well,” CNN reports. Katie told CNN that the caller was “rude, mean, and angry” and “acted like it was just a pain to have to be talking to me,” but said “she would look into her situation.” On April 1, CMS spokesman Aaron Albright told CNN that the federal agency was “reaching out to the state agency,” and later in the day Zellner said the state agency “has reached out to us to talk. So stay tuned.”