After a lifetime of living with cystic fibrosis, Katie and Dalton Prager have learned a lot about health care. More recently, they learned the hard lessons of health care economics.

Ms. Prager, 24, who may have only a year to live, was caught in an administrative struggle between Kentucky’s Medicaid program and UPMC that temporarily left her without insurance and no way to pay for the lung transplant she needs.

Their story — of a young couple whose common illness brought them together and whose love now drives them to stay alive — was first reported two weeks ago by CNN. The story helped pressure UPMC and Kentucky Medicaid to strike a deal within days, after three months of leaving Ms. Prager in medical limbo because of what both sides characterize now as “miscommunication.”

But the Pragers’ story also illustrates a sensitive debate within the transplant community: Which patients are transplant centers willing to risk giving a rare, healthy organ?

“The problem is, you’ve got not enough organs for the number of people who need them,” said Joseph Lynch, a pulmonologist at UCLA Medical Center who recently wrote a review of lung transplant survivability for cystic fibrosis patients. “And the issue becomes, if you have 10 lungs and 50 patients who need them, and you know one patient might live five years, and another will live 10 years, well, who do you give it to?”

The reason the Pragers had to come to Pittsburgh for transplants is because they are both infected with the bacteria Burkholderia cepacia, and UPMC is one of the few places that will do transplants on such patients. Cepacia exacerbates the lung-damaging effects of cystic fibrosis. While cystic fibrosis patients now can expect to live into their early 40s, those with cepacia often do not live into their late 20s. A cure remains elusive and it continues to contribute to patient deaths, with the last option being a lung transplant.

Studies show cepacia patients’ post-transplant survivability is not as good as patients without the bacteria. Still, other studies show that patients with the species of cepacia that the Pragers have — known as B. multivirons — tend to do as well as if they did not have the bacteria.

Mr. Prager, 23, is covered by his family’s private insurance and got his lung transplant at UPMC in November and is doing well.

“I’m an example that people with cepacia can do well with a transplant,” Mr. Prager said in an interview in his Pittsburgh apartment, where he was staying for post-operative care until this past week. “People should not say that patients with cepacia should not get transplants.”

But most of the 1,000 cystic fibrosis patients with cepacia in the United States won’t get transplants.

A stark line was drawn in 2008 after research by John LiPuma, a University of Michigan researcher who is considered the leading authority on the bacteria, found slightly lower survival rates for patients infected with most species of cepacia than non-infected cystic fibrosis patients.

Dr. LiPuma thought the data showing that one species of cepacia — known as B. cenocepacia — had much lower survival rates than other forms of cepacia would encourage hospitals to do transplants on patients with other types of cepacia.

But his study had the opposite effect, and now few transplant centers will attempt them.

Some larger transplant centers, however, were emboldened by the data.

Alice Gray, a pulmonologist and associate medical director of Duke’s lung transplant program, said it is understandable why smaller transplant centers have steered clear of cepacia.

Outcomes are closely monitored by the government agencies overseeing transplants, she said. “If you’re a small volume transplant center and you have one death, it can significantly affect your ability to continue to do transplants.”

Dr. Gray said Duke does three to five lung transplants on patients with cepacia each year, nearly all of them patients with B. multivirons cepacia, “and we have good outcomes.”

Joseph Pilewski, a pulmonologist and medical director of UPMC’s lung transplantation program, said UPMC has done 10 transplants over the last decade on patients with B. multivirons cepacia and had outcomes comparable to other cystic fibrosis patients without the infection.

“The decision-making and organ allocation processes are incredibly complex and admittedly imperfect,” Dr. Pilewski said in an email response to questions, “but if one considers potential lung transplant candidates, this experience provides impetus to perhaps take greater risks in this population and extend the opportunity for these typically courageous and younger patients.”

Dr. LiPuma praised the work of transplant centers such as Duke and UPMC, and he hopes their outcomes will persuade others to do such transplants. “That’s how the rest of the pack will follow those leaders.”

First Published: April 11, 2015, 4:00 a.m.