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New donor system has some patients worried Greenwich Time By Michael Dinan Staff Writer December 12, 2004 The double lung transplant Bettina Irvine underwent a week ago improved and may even have extended the 61-year-old Cos Cob resident's life, and not just because a genetic blood disease had advanced to the point where she couldn't breathe without an oxygen pack. In less than four months, a new system that determines the order in which patients receive donor lungs will significantly extend the waiting period for Alpha-1-antitrypsin deficiency sufferers such as Irvine. Currently, lung recipients are dealt with on a first-come, first-served basis. Candidates are assigned to waiting lists and, with consideration for how near they are to the available organ, called for transplant surgeries in the order in which they have been approved. There are 3,912 candidates now waiting for donor lungs in the United States, according to the United Network for Organ Sharing Web site. Since 1999, about 1,000 lung transplants have been performed per year. According to 2001 information, the latest available, the mean waiting time for a donor lung is just under two years after a candidate has been approved. The new system, scheduled to go into effect April 1, prioritizes lung transplant candidates over age 12 by assigning them a "lung allocation score." Candidates 12 and under will continue to receive donor lungs as they do now. The new formula was developed by two government contractors that oversee organ transplants for the federal government, UNOS, and the Scientific Registry of Transplant Recipients. UNOS approved the measure last summer. The lung allocation score is based on medical need and considers disease diagnosis, use of a ventilator, whether or not a candidate has diabetes, the amount of oxygen required at rest and other factors. The system is designed to help those patients who most urgently need a lung transplant by measuring how soon they would die without the surgery and how long they can be expected to live after it, said Dr. Stewart Sweet, a pediatric pulmonologist at Washington University in St. Louis, who was on the UNOS committee that proposed lung allocation scores. "The overriding principle is that waiting time is not the most appropriate way to allocate organs," said Stewart, who is affiliated with St. Louis Children's Hospital. "The sickest people die soonest on the waiting list and this new allocation is designed to give them first dibs." Candidates will be assigned a score between 0 and 100 and re-evaluated every six months. Those with a higher score have a better chance of obtaining lungs sooner. But the system, while sensible, will be unfair to candidates suffering from Alpha-1, Irvine said. The problem lies in applying a predetermined pecking order to candidates by focusing on their disease instead of their stage of illness, she said. Under the formula, patients are grouped by four major diseases: cystic fibrosis, idiopathic pulmonary fibrosis, chronic obstructive pulmonary disease and Alpha-1. In a presentation UNOS gave at New York-Presbyterian Hospital three weeks ago, it was made clear that the first two diseases, which are generally more immediately threatening, will be weighed more heavily in the lung allocation score than the last two, said Ken Irvine, Bettina Irvine's husband. "Those two top categories represent about 900 patients, and they will be transplanted before the other patients are," he said. "Given the allocation scores, they would be considered sicker. But in reality, they could be or could not be. Even if a (cystic fibrosis patient) is not as sick as an (Alpha-1 patient), the allocation scores, based on disease category, will carry the day." But even with disease grouping, the patients who need lungs the most will get them first, Stewart said. "A person who has very limited lung function might need lungs more quickly than a cystic fibrosis patient early in the disease," he said. "A person with Alpha-1, with advanced lung disease, should have a higher score, in theory, than a cystic fibrosis person doing well." Still, Bettina Irvine fears that the new system will shatter the hopes of transplant candidates waiting for a lung. "This is an untested algorithm that they've run across a computer," said Irvine, who waited four years for her double lung transplant. "With this new allocation system, you're taking away hope. You can live on hope, on faith in God. These are things that can't be measured scientifically." Stewart conceded that the simple benchmark of waiting list times will be lost, but added that he will be able to tell patients their lung allocation score and give them an idea of what scores are being served in the region. The model is not perfect, Steward said, but its formula will be continuously revised as UNOS collects data about survival rates of patients every six months. "We'll adjust the models accordingly," he said. "I can't promise that the system will work smoothly, but the critical thing is that when, for whatever reason, a patient comes to the door who doesn't have the luxury of waiting two years, that patient has a chance now. It's not a perfect solution, but overall, if you look at the patients dying on the waiting list, it gives many people hope who otherwise wouldn't have hope." For information about Alpha-1-antitrypsin deficiency, visit the Alpha-1 Association's Web site at www.alpha1.org. Copyright (c) 2004, Southern Connecticut Newspapers, Inc.
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