Randy Shepherd is a 36-year-old father of three who needs a transplant to replace a failing heart weakened by childhood bouts of rheumatic fever. When he was placed on a transplant waiting list last year, the prospect of resuming a normal life with a healthy donor heart helped him tolerate the fatigue, lost appetite and the inability to play sports he loved and work at the small plumbing business he founded.
But nothing prepared him for the shock of learning that Arizona's Medicaid program was eliminating transplant coverage for people with his condition.
"They said I would be placed on the inactive list until I could arrange some kind of alternative financing because it is considered elective surgery," said Shepherd, of Mesa, Ariz., who has been disabled for almost two years. The family hangs on financially with his wife Tiffany's salary as a dental hygienist.
As the United States continues debating expanded health care access, the state of Arizona has begun rationing some care it says it cannot afford to give its poorest residents. Beginning on Oct. 1, Arizona's Medicaid program, the Arizona Health Care Cost Containment System, stopped covering seven types of organ transplants, including heart transplants for non-ischemic cardiomyopathy, lung transplants, pancreatic transplants, some bone marrow transplants and liver transplants for patients with hepatitis C.
The reductions made by the Arizona state government were approved by the federal government, according to an Aug. 11 letter from Gloria Nagle, associate regional administrator for the Division of Medicaid & Children's Health Operations. In addition to limiting organ transplants, Arizona also restricted coverage of prosthetics and zeroed out podiatrists' services, preventive dental services, and wellness and physical exams for adult Medicaid enrollees.
Arizona Actions May Be Harbinger for the Nation, Doctor Says
"This may be a harbinger of what will evolve in this Obama national healthcare system where the expense of the health system will only be able to be contained by limitation of access," said Dr. David C. Cronin, director of liver transplantation at the Medical College of Wisconsin. "So everybody may be covered, but all services may not be available."
Of Arizona's decision to pull the plug on an insured patient's transplant, he said, "I don't see how that's fair on any level. It's indefensible to renege if the patient did everything they were supposed to do and they don't have another option. You shouldn't try to balance your budget on the backs of the most desperate patients."
Arizona's Republican governor and legislature, who already control the state's purse strings, want even more independence when it comes to determining which health care services Arizona Medicaid patients receive. Indeed, Arizona's newly elected Senate President Russell Pearce has argued for cutting the state's Medicaid program, even if that means Arizona will lose about $7 billion worth of federal grants.
"If we're saving money, the fact we lose some federal money means nothing," Pearce recently said. "If you can't afford Dillard's, even though they're having a great sale, you can't afford Dillard's."
Dr. Michael Shapiro, chief of organ transplantation at Hackensack University Medical Center in New Jersey, balked at the way Arizona chose to reduce its record deficit: "They're cutting in the wrong place."
"We can't afford to pay for everything for everyone," acknowledged Shapiro, a member of the ethics panel for the United Network for Organ Sharing, a private, nonprofit organization under contract with the federal government to manage the nation's organ transplant system. "Sick people need medical care and it's all of our responsibility to help them get that care. Doctors can't do it themselves."
Arizona Cutbacks Come as Medicaid Rolls Swell
Jennifer Carusetta, chief legislative liaison for AHCCCS, said Arizona Medicaid patients were notified on Aug. 27 of the impending changes, prompted by a 30 percent increase in enrollment during the recession and a federal requirement that the program maintain its eligibility requirements despite receiving fewer federal matching dollars.
The state is facing a $1 billion deficit in the program come July 2011, she said. Although Arizona's fiscal year began July 1, the state opted not to implement the cuts until Oct. 1, when it estimated they'd affect about 100 people on transplant lists. However, Carusetta said the state anticipated that only a fraction of them were likely to feel direct effects of the policy change. "We believe that only about 15 percent of those individuals would be able to get a match and secure an organ."
One of the patients who has felt the budget ax is Francisco Felix, 32, of Laveen, Ariz., whose liver has been damaged by hepatitis C. According to an account published in The Arizona Republic, Felix was admitted to Banner Good Samaritan Medical Center in Phoenix on Monday night after learning that a dying family friend wanted her liver to go to him. But when Felix couldn't come up with $200,000 to pay for the procedure by Tuesday morning, the hospital wouldn't operate on him and the liver went to another patient.
Organ Transplants Can Cost Hundreds of Thousands
In a prepared statement, Banner Health spokesman Bill Byron apologized for the disappointment and stress the family was feeling. He said that if Banner had absorbed the costs of giving Felix the liver, that action "could have committed the organization to providing the same service to the other 22 patients in the same situation as Mr. Felix. Costs for liver transplants can exceed $500,000, so it is not feasible for Banner to absorb the $12 to $15 million in costs associated with 23 procedures."
Byron said he hoped that a solution could be found for Felix "who we believe will need a transplant within the next 12 to 24 months."
Felix's family has begun working with the National Transplant Assistance Fund in Radnor, Penn., to raise the needed money, the organization's executive director, Lynne Samson, confirmed Wednesday.
"We work with families from all over the country who are referred to us by their transplant social workers when they find out that they either do not have insurance for the particular transplant, or the insurance is severely capped, or there's gaps in medication co-pays that they cannot pay for," Samson said. The fund then helps the patients raise money in their communities "in a way that is tax-deductible and doesn't jeopardize their eligibility for medical assistance."
Patients Nationwide Seeking Help for More Transplant Costs
Although the Arizona decision is one of the most drastic she's seen, Samson said she's observed that patients' families have begun turning to her for help beyond raising money for transportation to and from transplant centers, temporary housing while they're undergoing surgery, and anti-rejection drugs.
"Instead of just fundraising for those expenses, now people are being forced to fundraise for the entire transplant," Samson said.
Felix had been on the liver transplant waiting list since April. As of 5:42 p.m. Wednesday, there were 16,091 Americans waiting for a donor liver, according to the Organ Procurement and Transplantation Network, part of the federal Health Resources and Services Administration. By 7:01 p.m., that number had risen to 16,100.
Finding a New Way to a New Heart
Meanwhile, Randy Shepherd has been trying to find another way to obtain a new heart. In January, he'll qualify for Medicare disability insurance. But whereas the AHCCCS program would have covered 100 percent of his transplant if it had been performed before the Oct. 1 changes, Medicare only covers 80 percent, leaving him with "between $100,000 and $120,000 that we have to raise privately."
Even with a new heart, he said, "I'm told I'll probably never be able to be a plumber again. I'm actually going to school taking prerequisites to go into an RN program to be a nurse. Depending on how things work out, I might stay in school and become a pharmacist. I'm going to have a lot of medical bills to take care of when I start paying for them on my own."