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Times-Union: Raising a life-saving list’s profile

Raising a Life-Saving List’s Profile
By Casey Seiler, Albany Times-Union

Advocates for organ, eye and tissue donation — including several whose lives have been changed by such donations — gathered at the Capitol on Tuesday to thank state lawmakers and Gov. Andrew Cuomo for instituting changes they hope will boost New York’s worst-in-the-nation sign-up rate.

Currently, only 22 percent of eligible state residents (roughly 3.4 million people) are enrolled in the Donate Life Registry — a number that Assemblyman Richard Gottfried , D-Manhattan, called “shocking.” Meanwhile, New York has the third highest number of patients waiting for life-saving transplant surgery.

The problem, lawmakers and experts say, is that the state Department of Health and the Department of Motor Vehicles — a primary portal for signing up — don’t do enough to market the registry.

The budget legislation, passed last week, includes language allowing the administration of the registry to be handed off to a public-private partnership, following a model that’s now in place in other states. The Health Department is soon expected to release a Request For Proposal, which will be open only to existing organizations.

“There is a lot that government does best,” said Gottfried, who chairs the Assembly’s health committee, ” … but running a consumer-friendly system like the organ donor registry, experience in other states shows, can be done a lot better with a nonprofit organization.”

Aisha M. Tator, executive director of the New York Alliance for Donation, said that the state’s current sign-up process takes as long as 20 minutes, as opposed to as little as 60 seconds in Texas and many other states where public-private partnerships are in place.

“That’s a deal-breaker — you’re going to lose people,” Tator said. ” … Today, the easiest way (to sign up), unfortunately, is to fill out a brochure and mail it in. And that’s just not the way we do business anymore.”

The Alliance for Donation plans to submit a proposal to the Health Department once the process begins.

Those who took part in Tuesday’s news conference spoke with emotion about how organ donation had touched them or their families. Rachel Adler, a Schodack 12-year-old, told how what initially seemed like nothing more than a stomach virus in the summer of 2012 devolved into what was diagnosed by Albany Medical Center as total kidney failure.

“I woke up three days later in ICU,” said Adler, who tearfully described the ensuing months of dialysis. In January 2013, after spending only 12 days on the waiting list at Boston Children’s Hospital, Adler received a kidney from a 17-year-old girl who had died. Adler wants to become a kidney specialist.

Assemblyman Andy Goodell, R-Chautauqua, told of his cousin’s sudden death from a brain aneurysm several years ago. “Within days, she had donated both kidneys, her heart, her eyes, her skin,” Goodell said. “The family … received letters from the recipients telling them that their mother saved their lives.”

“What about us?” he asked. “Are we willing to save someone else’s life?”