Karen Heller: Rally aims to sign up more organ donors

Posted: April 06, 2011

In our region, 6,500 critically ill residents wait for organs, kidneys, livers, hearts.

After a notable 8.6 percent decline last year, local organ donations have increased - March was a banner month - but not enough if you ask anyone who has been waiting and waiting, an average of five years for a healthy kidney.

In 1994, Pennsylvania became one of the first states to list organ donation on driver's licenses. The region is a mecca with eight surgical centers performing transplants. However, New Jersey and Pennsylvania rank in the middle of all states in the percentage of population listed as organ donors, and Philadelphia's registration rate is dismal at 31 percent, largely due to misconceptions and myths.

The need only goes up. Due to advancements in medicine such as dialysis, "there are more people who survive with organ failure longer," says Dr. Patrick Kim, medical director of the Hospital of the University of Pennsylvania's trauma program. "I think of organ donation as public health, a way of helping somebody who might never get off the waiting list. But people don't like to think about death." Especially their own.

So legislators and donor organizations plan to rally in Harrisburg on Wednesday in support of pending bills that would mandate education in secondary schools while potentially boosting voluntary donations on vehicle and license registrations, all with the hope of augmenting donor rolls.

The goal is to expand regional registration to 50 percent. Later this month, 5,000 professionals will gather in Philadelphia for the American Transplant Congress.

One obstacle is that few people die from brain death, the optimum condition for donating organs, about 13,0000 of the 2.4 million Americans who die annually. Among those people, about a third fail to register.

"If we miss one person as a donor, we could miss helping as many as eight people with organ donation, and as many as 50 people with tissue donation," says Howard Nathan, CEO of the Gift of Life Donor Program, which serves the region. "Everybody should be a donor. Every 'no' means someone else's life won't be saved."

Lucy Elizabeth Graham's parents said yes. Two days after the 2-year-old was in a horrific car accident in 2005, one of her kidneys was donated to an infant, her liver and second kidney to two adults, her tissue bestowed to medical research.

"This was the only good that was able to come out of that horrible, horrible time," says her stepmother, Trisha Graham of West Chester.

Michael McVey also said yes. He died at age 14 after sustaining massive head trauma. He was the region's first donation after cardiac death, someone on a ventilator who has not been declared brain-dead, which now accounts for 20 percent of organ donations.

"Michael was able to help five people," says his mother, Sue McVey Dylan of Downingtown. "I miss him every day. But I think about how lucky we were, in a way, that he could help these people, to see how healthy these people are and what they are able to do with their lives."

Skeptics worry that potential donors won't get optimal care in the emergency room, which is why donor organizations guide the process instead of attending physicians. People believe that powerful, wealthy people receive preferential treatment over poor patients. And they worry that religions condemn the practice, when "every major religion endorses the concept of organ donation," HUP's Kim says. It's a great act of charity, giving life, a second chance.

Organizations want to increase living donations, finding healthy individuals who provide a kidney to a loved one. That's what former Inquirer reporter Julie Stoiber did for her brother's wife in 2003.

"If there's a good chance that, by doing this, you can extend someone's life, give her more time with her family, it's something to really think hard about," says Stoiber, who works as the chief of staff for Ballard Spahr's chairman. "Lisa's had seven-plus years of mostly good health. I'm thrilled. It was one of the best things I've ever done."

Last year, about 6,500 Americans donated an organ, 300 in our region. The goal is to get the national annual total of living donations to 10,000, while doubling local donations.

Meanwhile, the push is on to get everyone registered as a donor on driver's licenses or state ID cards.

"If you miss a donor, you miss a huge resource. We don't want to miss any opportunity," says Gift of Life's Nathan. "The point is to do first-person consent while you're healthy, so that you made the decision as a donor, not place the responsibility on your family at the worst possible point in their lives."

How easy is it to register? Ninety seconds. Go to http://www.donors1.org/register/


Contact columnist Karen Heller at kheller@phillynews.com or 215-854-2586. Read her blog posts on Blinq and her work at www.philly.com/KarenHeller. Follow her at Twitter @kheller.

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