New York has the worst organ donation rate in the country, and help is needed
Dressed in a hospital gown, Fred Knewstub, a retired Ithaca middle school teacher, lay in a room at Strong Memorial Hospital in Rochester, N.Y. for more than 10 months. His heart was dying, but his mind was very much alive. A disease called cardiomyopathy was causing congestive heart failure, robbing the Trumansburg resident and former marathon runner of his races and putting him on the list of candidates for an organ transplant. On April 16, 2014, Knewstub received a new heart.
“I think I’m going to appreciate life more,” he said.
Knewstub is not alone. Nearly 123,000 people in the United States are waiting for organ transplants, with New York residents accounting for 10 percent of the waiting list, according to data compiled by Excellus BlueCross BlueShield.
April is Organ Donation Month, but there is a major donor shortage. Despite needing so many transplants, New York has the lowest percentage of residents registered as organ donors in the country. It ranks dead last compared to other states, according to LiveOnNY, a nonprofit that helps facilitate organ transplants.
The organization found 83 percent of New York residents support organ donation but only 24 percent are registered donors. Tompkins County is an anomaly, with 40 percent of adults registered as donors—the highest number of any county in the state.
“While it takes 60 seconds to sign up on the registry in Texas, it takes more than 20 minutes in New York,” said Julia Rivera, the organization’s communications director. “In the current fast-moving technological environment, no one wants to wait that long to sign up on a registry.
More than 6,000 Americans died waiting for transplants in 2013, according to Excellus.
New York requires donors to be 18 years old to register, while other states place no age limits, Rivera said. There is less awareness about organ transplants because there has not been an extensive campaign by the government to garner more registered donors, she said.
“I wish it were more a part of driver education, so young people were thinking about it as well,” Knewstub’s wife Linda said.
Recently, LiveOnNY has succeeded in registering more people as donors.
“In the last three years, in collaboration with other recovery organizations, we have seen a 56% increase in enrollments statewide,” Rivera said.
Activists like Knewstub are working to improve New York’s reputation. April 16 marks one year since Knewstub got his new heart.
“I feel blessed,” Knewstub said. “If there is anything I can for this cause or any cause, I feel a responsibility to do what I can.”
Knewstub still has a long recovery ahead of him but said he feels much stronger now and even started jogging a bit. While the former teacher knows nothing about the person who gave him the gift of life, he said he would like to meet the individual’s family one day.
“Give it serious thought because it’s not just that individual that needs that organ,” Knewstub said. “That person has a whole extended family, people who love him…it’s a larger gift than you realize.”
Stephen Adams 