Two Illinois women are seeking a rare type of organ transplant, but they have learned that the Illinois Medicaid program considers the surgery experimental and won't pay for it.
The Illinois decision is based on a recommendation from an ethics panel convened to study the procedure, which involves transplanting the intestine and other organs, Crain's Chicago Business reported . No Illinois hospitals perform the surgery, which is called a multi-visceral transplant.
In February, Indiana University Health lobbied Illinois Medicaid to cover the transplants Brandy Whitfield, 32, of Lombard and Barbara Sensney, 67, of Olney. Medicaid is a government health program for poor and disabled patients.
Whitfield said she needs a new small intestine and stomach after a failed surgery to remove a benign tumor. Sensney said she needs a new liver, pancreas and intestine because of cirrhosis and liver cancer.
"I'm kind of in a fog right now," Sensney said after learning the state's decision. "I knew in my heart all along they weren't going to do it, but you always hope."
The surgeries were expected to cost more than $1 million each. IU Health's University Hospital in Indianapolis has performed 38 of the operations in four years.
The Illinois Medicaid program covers 2.8 million people with a budget of $17.8 billion. One year ago, Gov. Pat Quinn signed a package of $2.7 billion in cuts and tax increases he said was needed to save the state's bloated program from collapse.
Illinois Medicaid authorizes the multi-visceral transplant surgery for children, but until now didn't have a policy about whether the procedure would be covered for adults. A six-member ethics committee met May 17 to study the situation. It recommended unanimously that Illinois Medicaid should not approve such requests for adults.
The ethics committee noted that the Indiana hospital's transplant program and its surgeons are "reputable and qualified," but "they have not been able to provide definitive and specific outcome data measuring post-op quality of life and lifespan in each of those 38 patients."
Julie Hamos, director of the Illinois Department of Healthcare and Family Services, accepted the recommendation.
The new Illinois policy on the transplant states: "There is no peer-reviewed and published literature that demonstrates the effectiveness and safety of this procedure and, thus, it is experimental in nature."
Fewer than a dozen hospitals across the country perform the most of the surgeries, according to transplant surgeons and the Organ Procurement and Transplantation Network.
"I just want to get back to normal," Whitfield said. "I want to be able to interact with my child without being in constant pain."