| Author | Subject: Here is another example of Oregon's attitude toward the sick or injured |
| Tom | Posted At 19:21:24 06/06/2000
Oregon denies transplants for dying teen The state health plan won't authorize a combination lung-liver surgery for Brandy Stroeder, who suffers from cystic fibrosis Tuesday, June 6, 2000 By Joe Rojas-Burke of The Oregonian staff Sprawled on a hospital bed and breathing enriched air through a tube in her nostrils, 18-year-old Brandy Stroeder clasped a teddy bear to her chest as if it were a life preserver in a stormy ocean. She is hanging on for the legal battle that could decide whether she lives or dies. Stroeder was born with cystic fibrosis, one of the most common deadly genetic afflictions. The advancing disease has reached a point where doctors say the young woman from McMinnville will die in a matter of months without a combined transplant operation to replace her damaged lungs and her failing liver at the same time. Stroeder's health insurer, the state and federally funded Oregon Health Plan, won't authorize the combined operation -- even though the plan routinely pays for separate lung or liver transplants for patients with cystic fibrosis. "I don't think they've given a rational explanation of why. They just say it's against the rules," said Stroeder, whose health is too fragile to survive either operation alone. She and her mother have spent the past six months appealing the denial unsuccessfully. Now they are suing the state in the Yamhill County Circuit Court. "I just don't know how they can say who should live and who should die," said the mother, Karen Stroeder, 39, who supports her two children by working for a meat-packing company in McMinnville and as a part-time tax preparer. State officials declined to comment on their decision to deny coverage for the potentially lifesaving operation. "We've been advised by the attorney general's office not to talk about this case because it is in litigation," said Hersh Crawford, director of the Office of Medical Assistance Programs. A spokesman for the attorney general's office said staff lawyers won't comment until they've completed their review of the case. A preliminary court hearing is scheduled for June 15. Surgeons at Stanford University -- where Stroeder's doctors want to send her -- and a handful of other centers around the world have performed the combined lung and liver operation for more than a decade. But it has not gained the acceptance of lung transplantation alone or combined heart/lung transplantation for cystic fibrosis. The Oregon Health Plan has paid for 15 lung transplants for cystic fibrosis patients in the past four years. Dr. Jeffrey Edelman, a lung specialist at Oregon Health Sciences University who has experience with the simultaneous lung and liver procedure at another institution, said it is probably a riskier operation than either transplant alone. But if the patient makes it through the operation, his opinion is that the risks become essentially the same as a single transplant operation. In the largest series of patients reported in medical literature that Edelman could recall, seven of the 10 patients who underwent the combined operation in France were alive one year later. "That is roughly equivalent to what survival is after lung transplantation alone," he said. Edelman said the dispute raises ethical questions that society has never been able to answer to the satisfaction of everyone. "It's not a simple cut-and-dried issue," he said. The Likelihood of success remains unknown because of a shortage of scientific studies. Whether it would be wiser, in general, to spend the money on more clearly effective care remains unclear, he said. The operation also requires giving organs that could potentially save three lives to just one person. Because of the scarcity of organ donors, doctors sometimes divide a pair of lungs between two cystic fibrosis patients. "But for this one patient, it's basically going to be a life or death decision," Edelman said. Long wait for organs Stroeder, meanwhile, wonders whether she can survive long enough to make it through both the legal proceedings and the long wait for suitable donor organs, typically about two years for patients seeking lungs and a liver. Lung and liver problems have put her in the hospital every few weeks for the past year. In spite of that, she has managed to complete her senior year with credits to spare and she expects to attend the graduation ceremony June 16 with her classmates. She still nurtures a long-term dream of attending culinary school, ideally in France. She wants to make a name as a chef at some notable four-star restaurant and then open her own bed and breakfast. "That's a little far-fetched right now," she said Monday from her hospital bed. "With all this messing around and stuff, I might get on the (transplant) waiting list and not make it until my number is called." |
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