Woman needing lung transplant falls through cracks of health-care system, says she’s treated as nothing more than a ‘price tag’

Katie Prager, a 24-year-old cystic fibrosis patient from Ewing in Fleming County, needs a lung transplant, but has been denied one because she has met her lifetime maximum on Medicare, Christy Hoots reports for The Ledger Independent in Maysville.

Photo from The Ledger Independent

“They’ve put a price tag on my name. That’s all I am to these people right now,” Prager told Hoots from her hospital bed at the University of Kentucky‘s Chandler Medical Center.

Prager has had cystic fibrosis her entire life, but it was a diagnosis of an infection called burkholderia cepacia in 2009 that caused her lung function to rapidly decline and caused the need for a lung transplant. She was told in 2013 that the UK Center for Cystic Fibrosis does not do transplants on cystic fibrosis patients with this infection, so she was sent to the University of Cincinnati hospital, Hoots reports.

She and her husband Dalton Prager, who also has cystic fibrosis, were then sent to the University of Pittsburgh Medical Center because it is only one of two hospitals that will transplant a lung into a patient with this infection. They began evaluations in January 2013.

Dalton Prager was quickly approved and successfully received a double lung transplant in November 2013. Katie Prager wasn’t approved until June 2013. While waiting for a donor lung, she was discharged to spend Christmas with her family, only to hear from the hospital that she could not return there because the Medicare maximum had been reached.

“At first, I thought I might be able to use Medicaid, but was told that it wouldn’t cover my transplant due to UPMC being out of network,” Katie Prager told Hoots. “After explaining to Medicaid that there are only two places in the country who would operate, due to cepacia, they still refused to work together to help me. In January 2015 I filed an appeal with Medicaid to have them reconsider. The appeal was denied.”

She was recently told she would never be eligible to return to UPMC for a transplant and there was nothing else they could do for her, Hoots reports.

“They told me to basically stop wasting my time,” she told Hoots. “These are people who we’re trusting with our lives and they say that. Most people have no problems when they have to have medical treatments or transplants, and I’m being given the runaround. I’m not trying to be a burden on the system — that isn’t what I want. If I could work and get my own insurance, I would. All I want is a normal chance at life. I want to get my bachelor’s degree, get up every day and go to work, run a 5K and have a normal life with my husband. I want to do all the things that young people in love get to do. Is that so much to ask?”