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Goal of 20 million new organ donors set

Goal of 20 million new organ donors set

Last year, Donate Life America, the nonprofit that advocates for people to donate their organs, reached an important, 5-year-old goal.

Beginning in 2006, the organization pushed the number of adults who had registered to donate their organs, tissues and corneas from 60 million to 100 million -- a stunning achievement finally attained in October last year, reaching 105 million by the end of 2011.

Still not satisfied, though, Donate Life America said last week that it has a new goal for 2012: to register 20 million new donors, a figure that would be nearly three times the average number of people it registered each of the previous six years, but clearly needed when there are about 112,000 people currently waiting for a donation and about 15 of them will die every day while waiting.

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Twenty million "is absolutely a huge number," said David Fleming, president and CEO for Donate Life America. "But ... setting this seemingly unreachable goal is making us think differently."

A big part of thinking differently will come from two projects being developed in this region through the University of Pittsburgh Graduate School of Public Health and the Center for Organ Recovery & Education, the Pittsburgh-based regional agency responsible for organ procurement in Western Pennsylvania, most of West Virginia and part of New York.

"CORE is one of the best regional organizations out there and always forward-thinking," Mr. Fleming said. "We expect these kind of ideas from them."

The national projects the Richmond, Va.-based Donate Life America will roll out this year include the Flaunt Your Blue and Green campaign that seeks to get local celebrities and everyday people to wear Donate Life's colors, similar to how Susan G. Komen for the Cure has made pink associated with breast cancer awareness.

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Other programs include a series of flash mobs around the country sometime this spring to bring attention to organ donation, and creation of a Facebook page project called 365 Stories that will tell a different story every day of someone whose life was changed by organ donation.

The projects CORE and Pitt are working on are still in the research and pilot stage and won't be rolled out nationally just yet.

"But they could be if our research bears out their effectiveness," said Howard Degenholtz, a Pitt associate professor in the Graduate School of Public Health's Department of Health Policy & Management and principal investigator on both projects.

The first, based on an idea Donate Life America brought to CORE and Pitt, seeks to reach younger generations via one of their favorite ways to communicate: text messaging.

"It's the way several generations of kids are communicating," Mr. Fleming said.

The idea started in 2007 when Donate Life America watched in amazement at a surge of nearly 200,000 people with connections to the University of North Carolina register to donate organs after UNC's student mascot, Jason Ray, was killed but had donated his organs to help others.

"They all had affinity with UNC sports, and we thought, 'What if we could do that with sports teams everywhere and reach people through them?' " Mr. Fleming said.

Thanks to a $651,443 grant from the U.S. Department of Health and Human Services' Health Resources and Services Administration, CORE, Pitt and Donate Life America hope to role out their Text2DonateLife project this spring at local minor league and college hockey and baseball games, and perhaps Pirates baseball games.

The original idea was to ask people attending sporting events to register via text message after a video request by one of the local team's players.

"But we found out through focus group testing that people don't like to send personal information -- dates of birth, Social Security numbers -- via text," said Misty Enos, CORE's associate director of community outreach and a former transplant nurse.

Instead, the project is now developing a way that by sending a message to a preselected text number -- say, 5555 -- the texter will then be referred directly to a secure website that will take you to the official donation registry in the state in which you live.

This spring, the new method will be piloted at games in West Virginia and Western Pennsylvania -- with the ongoing big goal of reaching major league teams like the Pirates, Penguins and maybe even at the holy grail of sports in the region -- a Steelers game next fall.

The second project began with a brainstorming session between CORE and Mr. Degenholtz's team at Pitt that realized that prior research continued to show that a big barrier to people signing up to donate while they, say, stand in line at the Department of Motor Vehicles line is "that people still see it as a life-and-death decision and the person they'd most like to talk to about it is their family physician," the Pitt professor said.

There are two problems with that. First, it's not a primary topic family physicians bring up with their patients when they're in for a checkup.

Second, even if it was, "this is not a topic covered in medical schools," Mr. Degenholtz said. "And most family physicians are unlikely to ever have a patient affected directly by a transplant."

CORE and Pitt see this as a growth from an ongoing project they've been doing in West Virginia where they tried -- and succeeded -- in raising the percentage of organ donors there by working with Department of Motor Vehicle employees, educating them about how to ask people to donate and preparing them with answers to basic questions via online tutorials.

But it also builds on the pharmaceutical industry's success in getting physicians to try new drugs by approaching them directly with samples in their office, Mr. Degenholtz said.

They're still months away from completing the training materials, he said, because "no one else around the country has found a good model on reaching physicians on this issue."

Eventually, they hope to work with 300 rural and urban physicians' offices in Pennsylvania and West Virginia and do a trial run to see if the work boosts donor registration.

If it works, it could help contribute to that goal of 20 million new donors this year, a daunting challenge, everyone acknowledges.

But with creative efforts like this and Text2DonateLife and the shift in the way people think about donation, it could be possible, Ms. Enos said.

Donate Life America "believes there's a shift in the thought process about this with the millennial generation, that they want to be involved in causes," she said. "And we're going to try through our projects to make that easy for them to do."

First Published: February 6, 2012, 5:00 a.m.

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