Since his kidneys failed three years ago, Graeme Spencer has spent 20 hours a week hooked up to a machine that filters and cleans his blood. When he's not in dialysis, the 34-year-old former IT executive passes the time watching television at his parents' house in Canberra. He says his illness has cost him his career, his sporting prowess and his marriage. A kidney transplant is the only long-term solution (Spencer, a diabetic, also needs a new pancreas). But another 1,500 Australians are waiting in the kidney queue. Says Spencer: "There's always hope I'll be cured but it's so frustrating that it hasn't yet happened."
Surveys show that 9 out of 10 Australians support organ donation, and 3.5 million have indicated their willingness to donate their organs (via driver's licenses, donor cards or registers). Australia also has one of the world's highest transplant success rates. Yet for the 2,000 people awaiting an organ transplant, making it to the operating table is an agonizing process: fewer than 200 Australians a year become donors. That rate (about 10 per million population) is one of the lowest in the developed world. Spencer has a 5% chance of dying before suitable kidneys become available; with no machines to keep them alive outside hospital, those in line for heart, lung or liver transplants are even more vulnerable.
To improve their chances, the Australian government last November launched a national organ donor registry, which will be the centerpiece of National Organ Donor Day on Feb. 24. Some observers say donation rates would be higher if family members were barred from vetoing the removal of a loved one's organs. Others say such a move would have the opposite effect, eroding public support. Says Plunkett Center for Medical Ethics director Bernadette Tobin: "One ugly story can have a terrible effect."
Happily, there are many success stories. By the time Tim Condon turned five, cardiomyopathy had reduced his life expectancy to a few months. His only hope was a heart transplant. When the Perth boy was offered a place in the Victorian transplant program in January 1994, his father Dudley moved with him to Melbourne. But after a year of ferrying Tim into and out of the Royal Children's Hospital, Dudley and his wife Kerryn decided to take their gravely ill son back home. Three weeks later, the call finally came. "The transplant gave me back my life," says Tim, now a sports-mad 12-year-old. "I can do all the normal things a kid my age does."
If compatible recipients are found, a single organ donor can save up to nine lives. But only 1% of the 130,000 Australians who die each year meet the criteria for organ donation. Says Australians Donate national director Bruce Lindsay: "There's a misconception that you can die in a motor accident by the roadside and your organs can still be donated. You actually have to die in an intensive-care unit attached to a ventilator so your organs can be maintained with oxygen until they are retrieved."
When Carol Burnett's daughter Kelly died suddenly in 1995, the 20-year-old nursing student's organs couldn't be donated because her life support unit had been turned off to let her try to breathe on her own. But Kelly, who always carried her donor card, could still donate tissue-including corneas, bone, heart valves and skin. "I thought she would be disfigured, but it's not macabre at all," says Burnett, who, on learning that tissue donation could also help others, formed (and still heads) the Friends of the Victorian Donor Tissue Bank.
Australia now has five statewide agencies to target and manage potential donors. All are versions of the "Spanish model," where a central office oversees donor teams of doctors and/or nurses based in ICUs. South Australia has been the most successful: since its agency, saoda, was set up in 1996, its donor rate has been double the national average. But most state donor programs lack the staff needed to identify every potential organ donor, says Donate West medical director Dr. Millar Forbes. Establishing a consistent national protocol for registering people's desire to donate organs should also boost rates and help identify potential donors, says Geoffrey Leaper, general manager of programs at the Health Insurance Commission, which administers the National Registry. But that won't happen until the federal Privacy Commissioner allows the HIC to access driver's license databases.
Some politicians and health experts are calling for stronger remedies. Last November a West Australian Parliamentary committee report said all Australians should be considered donors unless they've formally registered their objection. At least 13 countries, including Spain, Austria and France, have presumed-consent laws. But what supposedly works in Europe won't necessarily work in Australia, says Australians Donate's Lindsay. "I can't imagine Australians accepting the notion that their bodies will become the property of the state, to do with as it likes," he says. That's not the idea, according to Australasian Transplant Coordinators Association president Greg Armstrong: "We really need to consider presumed consent, because if organ donation is legally sanctioned, theologically correct and ethically supported, why must people have to take action themselves to donate?"
If a newly dead Australian has ticked the organ-donor box on his driver's license or signed up with a donation register, a hospital may legally remove his organs without consulting his next-of-kin. But in practice this doesn't happen, says Armstrong. Donor units must make sure the patient didn't withdraw consent before death, he says, and "the only logical way of determining this is to ask the family."
If relatives say no, their will prevails, even if it overrides the dead person's intention. But despite the statistics, which show that in some states up to 60% of requests for organs made to families are refused, it's "extremely rare" for families who are aware of their loved ones' wishes to veto their wish to donate, says Lindsay. Organ-donor campaigners don't want to make people feel guilty, says West Australian donor coordinator Jean Maree Cusack: "The main goal is to get people to talk about donation with their families, because most people just want to honor their loved ones' wishes."
It's six months since Elaine Ferguson died at age 22. She'd talked it over with her parents Janice and Jim (both registered donors) before ticking the organ-donor box on her license. After Elaine collapsed from an aneurism last June, they talked it over again. "Elaine said, I'd like to think that somebody could live for me,'" Janice Ferguson recalls. "We're so proud of what she achieved through her death, to know that five people are now walking on this earth because of her." Two thousand others are hoping more Australians will follow Elaine's example.