Ms. Hamos and her top administrators are “definitely between a rock and a hard place,” says Arthur Caplan, head of the division of medical ethics at New York University Langone Medical Center. “From the point of view of (the person) who needs the procedure, they should fight hard. From the state's point of view, they have to weigh that request against the needs of a lot of other people, against the odds of success.”
Illinois Medicaid, which covers 2.8 million people with a budget of $17.8 billion, is faltering. Just a year ago, Gov. Pat Quinn cut $1.6 billion from the program, including reducing reimbursement rates to providers, and implemented a $1-per-pack cigarette tax hike to salvage a program he said was on the “brink of collapse.”
Typically, Medicaid patients receive care within the state. But Indiana University Health has lobbied the program to cover multivisceral transplants for Brandy Whitfield, 32, of west suburban Lombard, and Barbara Sensney, 67, of Olney, about 245 miles south of Chicago. The surgery would provide each woman with large portions of a new digestive tract.
Ms. Whitfield, a stay-at-home mother and former school bus aide, says she needs a new small intestine and stomach after a botched surgery to remove a benign tumor in her abdomen. She receives nutrients through a catheter in her arm and has a tube in her stomach that drains fluids into a bag. “I just want to get back to normal,” Ms. Whitfield says. “I want to be able to interact with my child without being in constant pain. I want to go outside without people staring at me.”
Ms. Sensney, a retired sales director, says she needs a new liver, pancreas and intestine. About a year ago, her abdomen swelled to the size of that of a woman who is nine months pregnant. She was diagnosed with cirrhosis and liver cancer, among other ailments. Doctors have given her no more than three years to live if she doesn't receive the surgery, she says.
Both women say their physicians referred them to IU Health, which then took their cases to Illinois Medicaid. IU Health did not comment. Ms. Sensney also is on Medicare, the federal health insurance program for the elderly and disabled, but she doesn't meet its requirements to cover the operation.
The requests for such procedures were the first for Illinois Medicaid, which covers multivisceral transplants only for children with prior authorization, a Department of Healthcare and Family Services spokeswoman says. More than two dozen state Medicaid programs cover such transplants, including California, Michigan and Texas, as do several of the largest private insurance carriers in Illinois, including Blue Cross & Blue Shield of Illinois and UnitedHealthcare of Illinois, representatives say.
“Even though these may be high-cost procedures, are they going to lower your medical costs down the road and improve the quality of life in a patient?” a spokeswoman for the Texas Medicaid program says. “We found it did.”
Multivisceral transplants became successful about 20 years ago. Those involving the intestines are so rare, though, that fewer than a dozen hospitals across the country perform the majority of them, and none is in Illinois, according to transplant surgeons and the Organ Procurement and Transplantation Network.
About 80 percent of patients nationwide who receive a transplant involving the intestines survive one year, about 60 percent for five years and less than 50 percent beyond 10 years, federal transplant data shows. IU Health boasts on its website that its one-year survival rate for adult intestine-multivisceral transplants, at 86.9 percent in 2011, bests the national average.
In the end, the ethics panel and Ms. Hamos rejected UI's requests. They deem multivisceral transplants for adults “experimental,” saying there's no peer-reviewed and published literature that demonstrates their effectiveness and safety, according to the state's new policy, released on June 28.
While the IU transplant program and its surgeons are reputable, the committee says, they didn't provide definitive data measuring the post-surgery quality of life and lifespan of its 38 multivisceral transplant patients since they started performing these procedures four years ago.
The three-page policy report explains the committee highlighted the “dearth of available resources,” including limited Medicaid dollars and a long waiting list for organs.
“I don't know what I'm going to do,” Ms. Whitfield says.
“I'm kind of in a fog right now,” Ms. Sensney says. “I knew in my heart all along they weren't going to do it, but you always hope.”
Medicaid's balancing act originally appeared on Crain's Chicago Business.
