November 17, 2010 - STEVE INSKEEP, host:
Let's go next to Arizona, where 98 patients approved for organ transplants have been told they're not getting transplants. The patients are on Arizona's version of Medicaid and the state is trying to close a big budget deficit. NPR's Ted Robbins has this report on what's being called an unprecedented denial of medical service.
(Soundbite of bat hitting ball)
Mr. RANDY SHEPHERD: Whoa. Right up the middle. Nice one.
ROBBINS: Randy Shepherd is 36 years old and six-foot-three.But has to toss baseballs to his three-year-old son Nathan while sitting-down in a lawn chair. He has cardiomyopathy: his heart muscle is deteriorating.It's the result of rheumatic fever he had as a child. He had his heart valves replaced as a teenager, but that was 20 years ago.
Mr. SHEPHERD: The muscle's gotten tired and distended. And the muscle's worn out.
ROBBINS: You can hear the weakness in his voice, even though doctors implanted a pacemaker in 2008. They've told Randy Shepherd that he needs a heart transplant to survive. AHCCCS, the Arizona Health Care Cost Containment System, is the state's Medicaid program. It was the only health insurance Shepherd could get because he had a pre-existing condition, and he had little money since he was forced to stop working in his plumbing business.
AHCCCS authorized his transplant more than a year ago.
Mr. SHEPHERD: JULY 23rd of '09 was the date they officially put me on the list.
ROBBINS: And by this summer, he'd moved up to the top of the transplant list.
Mr. SHEPHERD: My 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 one that's available is mine.
ROBBINS: It was his. Facing a billion and a half dollar budget deficit, Arizona cut out all state-funded lung transplants, some bone-marrow transplants, and some heart transplants, including for the condition Randy has.
Mr. SHEPHERD: Well, as of October 1st, due to the budget cuts, AHCCCS has said they're unable to pay for the transplant.
ROBBINS: It's not unusual for private insurance companies or government agencies to change eligibility requirements for medical procedures - ahead of time. But medical ethicists say authorizing a procedure then reversing that decision is unheard of.
Dr. ARTHUR CAPLAN (Director, Center for Bioethics, University of Pennsylvania): 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.
ROBBINS: Arthur Caplan is head of the Center for Bioethics at the University of Pennsylvania. He calls the reversal awful behavior, because Arizona is going back on a covenant it made with its patients. And also, he says, because these are patients for whom time is critical; patients who spent months, years, thinking they were covered.
Dr. CAPLAN: They then stop trying to raise money; stopped trying to see what Uncle Fred might be willing to give them. They don't have the bake sale. They don't make the appeal in church.
ROBBINS: The state says the cuts will save about four and a half-million dollars this year. No one from AHCCCS would agree to an interview. But the state agency provided us with the data it gave to the legislature. It shows the procedures have poor outcomes - that most patients die after the transplants.
But critics say that data was cherry-picked; it only included AHCCCS's own patients and only for a two year period. A coalition of transplant centers, including the University of Arizona and the Mayo Clinic, recently gave the state more date showing better outcomes.
State Representative John Kavanaugh is on the House Appropriations Committee in the Arizona legislature. He looked at the new information.
State Representative JOHN KAVANAUGH (Republican): It's a terrible situation, but we don't want anybody to die because of a faulty data set. So if we made a mistake, then we're going to reinstate those that require it.
ROBBINS: Kavanaugh is promising a hearing when the Arizona legislature convenes in January. He says the state can cut money somewhere else. Meanwhile, one patient has found a private bone marrow donor.
Randy Shepherd says he and his wife were bitter when they first learned approval for his new heart was taken away. But they've learned to appreciate the time and the medical procedures he's already had.
Mr. SHEPHERD: 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 would not have had otherwise, because AHCCCS paid for my pacemaker.
ROBBINS: Now on disability through Social Security, Randy Shepherd will become eligible for Medicare next year. That gives him some hope, whatever the Arizona legislature does. Ninety-six other patients wait.
Ted Robbins, NPR News.
