In Arizona, 98 low-income patients approved for organ transplants have been told they are no longer getting them because of state budget cuts.
The patients receive medical coverage through the Arizona Health Care Cost Containment System (AHCCCS), the state's version of Medicaid. While it may be common for private insurance companies or government agencies to change eligibility requirements for medical procedures ahead of time, medical ethicists say authorizing a procedure and then reversing that decision is unheard of.
A Matter Of Heart
Randy Shepherd is 36 and 6-foot-3, but he has to toss baseballs to his 3-year-old son, Nathan, while sitting in a lawn chair. Shepherd has cardiomyopathy; his heart muscle is deteriorating. The condition is the result of rheumatic fever he had as a child. As a teenager, he had his heart valves replaced, but that was 20 years ago.
"The muscle's gotten tired and distended," Shepherd says. "It's just worn out."
You can hear the weakness in his voice, even though doctors implanted a pacemaker in 2008. They've told Shepherd that he needs a heart transplant to survive.
AHCCCS (pronounced like "access") was the only health insurance Shepherd could get because he had a pre-existing condition and, since he was forced to stop working in his plumbing business, little money. The agency authorized his transplant more than a year ago.
"The nurse who's the transplant coordinator did tell me about two months ago that I'm the next one of my body size and blood type, so the next [heart] that's available is mine," Shepherd says.
A Question Of Ethics
But as of Oct. 1, AHCCCS said it is unable to pay for Shepherd's transplant. In fact, facing a $1.5 billion budget deficit, Arizona has cut out all state-funded lung transplants, some bone-marrow transplants and some heart transplants including transplants for the condition Shepherd has.
"To basically renege on what you promised was [going to] be a chance at life is a very, very bitter indictment of the ethics of the Legislature," says Arthur Caplan, head of the Center for Bioethics at the University of Pennsylvania.
Caplan calls the reversal "awful" behavior because Arizona is going back on a covenant it made with its patients, and because these are patients for whom time is critical patients who spent months, some years, thinking they were covered.
"They then stop trying to raise money, stop trying to see what Uncle Fred might be willing to give them," Caplan says. "They don't have the bake sale. They don't make the appeal in church."
Arizona says the cuts will save about $4.5 million this year.
No one from AHCCCS would agree to an interview with NPR. But the state agency provided data it also gave to legislators to make their decision. It says only 15 percent of those waiting actually ever find transplant matches. The problem is, however, that no one knows ahead of time which 15 percent that will be.
The state's data also show the procedures have poor outcomes and that most patients die after the transplants. But critics say the data was cherry-picked, as it included only patients enrolled in AHCCCS and only for a two-year period.
A coalition of Arizona transplant centers, including well-known programs at the University of Arizona and the Mayo Clinic, recently gave the state data for a broader patient group and a longer time period. It showed much better outcomes.
Waiting Until January
State Rep. John Kavanagh, a member of the House Appropriations Committee in the Arizona Legislature, has looked at the new information.
"It's a terrible situation," Kavanagh says, "but we don't want anybody to die because of a faulty data set. So if we made a mistake, we're [going to] reinstate those that require it."
Kavanagh is promising a hearing when the Arizona Legislature convenes in January. He says the state can cut the money somewhere else.
Meanwhile, one patient has found a private bone-marrow donor.
Shepherd says he and his wife were bitter when they first learned his approval for a new heart was taken away, but they have learned to appreciate the time and the medical procedures he has already had.
"If I were to die because they didn't give me the transplant, I've had the last 18 months with my kids that I wouldn't have had otherwise because AHCCCS paid for my pacemaker," Shepherd says.
Now on federal disability, he will become eligible for Medicare next year. That gives him some hope whatever the Arizona Legislature does. Meanwhile, 96 other patients in Arizona wait.