Julia Strecher was twice blessed with a new organ. Born healthy, a virus attacked her heart when she was nine months old. Five months later, she received the heart of a 20-month-old boy who drowned, becoming the first pediatric heart transplant recipient in the state of North Carolina. Then in 2000, at the age of nine, the heart began to fail. Julia suffered six cardiac arrests before she was able to get a second heart transplant. This one would last nearly a decade.
This March, while on a beach vacation with her family in the Dominican Republic, the 19-year-old college student told her boyfriend, "I'm so happy now I could die." That night, her heart gave out and she passed away in her sleep.
Some may think this story doesn't have a happy ending, but her parents, Vic Strecher and Jeri Rosenberg, don't see it that way. They feel lucky that they had an extra 18 years with their daughter, time that wouldn't have been possible without her transplants. "We're eternally grateful to the donors for giving Julia that life," says her father.
They're also keenly aware of how fortunate they are to have benefited from not one, but two, donors. An estimated 107,000 people are currently waiting for organ transplants. But in the year 2009, there were 8,021 organ donors, a number that has been fairly steady throughout the years, says Dr. James Bowman, medical director of the Health Resources and Services Administration's division of transplantation, a division of Health and Human Services which oversees organ procurement. "The number of people on the waiting list is increasing exponentially, while the donor list is going up very slowly," he said.
Several new state, federal, and legislative initiatives are aimed at closing that gap. If the efforts are successful, supporters hope the donor list could grow dramatically, allowing thousands of other people who are waiting for organs to have their lives extended. "Anything that would increase awareness and the potential for people to be on an organ donation list could help save thousands of lives," said Jeff Guillot, legislative director for New York assemblyman Richard Brodsky, who is proposing one of the state initiatives.
Brodsky, whose 18-year-old daughter received two kidney transplants, has introduced an intriguing but controversial "presumed consent" plan: Instead of opting in to be donors, residents would have to opt out. The law would provide a place on a driver's license application to declare an intent not to be part of the state's organ and tissue registry. If a person does not fill out this section, it will be presumed that they want to donate their organs. Brodsky points to his state's meager 11 percent registration rate as evidence that something drastic should be done. Still, the measure has drawn criticism.
The ethics subcommittee of the United Network for Organ Sharing (UNOS) opposes it, calling it "coercive" and saying it goes against the value Americans place on individual rights. Tarris Rosell, clinical associate professor at the University of Kansas Medical Center, says it could discriminate against those who are either illiterate or don't speak English and may not realize that failing to opt out makes them automatic organ donors. Others could inadvertently neglect to fill it out, says Melissa Devenny, assistant director of Donate Life America, a sister organization to UNOS. She recommends Department of Motor Vehicle employees be required to ask those who left the portion blank if they meant to become a registered organ donor; but that requirement is currently not part of Brodsky's legislation, which is now sitting in committee.
Despite the criticism it's drawn, Brodsky is pleased that his proposal has started a dialogue on how to address what he sees as inadequate organ donation laws. "We need change and reform and we're going to get it," he said.
On the other coast, California Representative Elaine Alquist has proposed a bill that would create the first ever state-run living registry for kidney donation. (To date, 85,066 people are waiting for kidneys, 16,756 of them in California.) Currently, efforts to match donors with recipients are handled by various transplant centers and on internet sites, making for a haphazard system. The living registry would "help transplant centers receive more qualified potential living donors," says Bryan Stewart, President of Donate Life California, which coordinates the state's organ donation.
The Senate approved the bill this week. If the assembly passes it, it's expected to be signed by Governor Arnold Schwarzenegger, who has publicly supported it. Federal agencies are also getting in the act, trying to get people who are supportive of donating to sign up with donor registries.
Last year, Health and Human Services Health Resources and Services Administration's division of transplantation got 131,266 people to register when it reached out to colleges and universities. The next target group is those over 50, to let them know that many of them are healthy enough to be eligible to donate.
Other efforts are focused on a more personal appeal, by letting potential donors learn more about organ recipients. The New Jersey Sharing Network, which recovers organs and tissue for transplants, is taking advantage of social media with its My New Organ website that provides videos of transplant recipients along with a link to register. The goal is to tap an effective communication source to make people aware of the need to donate and make it easier to register, so they're more likely to act.
Since it launched in early May, the site has brought 1,284 Facebook fans to the organization and increased Twitter followers by more than 150%. It's too soon to know what effect that will have on actual donor sign-ups, but supporters are optimistic that the additional interest will have an effect on donor registries. "Nothing hits home more than a person who has had their life saved" through organ donation, says Myra Burks-Davis, assistant director of public relations and community affairs for the network.
Julia's sister, Rachael, knows that better than most. She and a friend set up a link on Julia's Facebook page after she died this spring asking people to register as donors in the state of Michigan, where Julia lived, so others could benefit as she had. Since the link went up March 8th, more than 200 have registered.
Those who are still waiting for an organ, like 19-year-old Florencia Quesnel, are hoping that all these efforts could boost donors in time to help them. The Houston, Texas, college student, who has dreams of entering the fashion industry, has been on the list for a year, ever since she was diagnosed with a rare liver disease. But she remains optimistic she'll get a new liver before it's too late. "I am hopeful," she says. "I have to be."
http://www.ivillage.com/will-new-organ-donor-efforts-extend-more-lives-hers/4-a-210190
