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New registry will help save lives
For Dear Life

Lemuel Bradshaw was 28 years old when doctors told him he needed a new heart. His was failing rapidly, and he soon found himself kept alive by machines. Because of his deteriorating condition, he moved to the top of the list of people waiting for transplants, and he only had to wait three weeks for a new heart.

Most people who need transplants are not so lucky. Thousands of Texans are on the waiting list for organ transplants, and many of them will die waiting. To help those people, the 2005 Texas Legislature created a new program to help Texans learn about organ donation and register their intent to donate.

A long wait
In December 2005, the Organ Procurement and Transplantation Network listed more than 90,400 people on its nationwide waiting list for transplants. Of those, 6,234 were in Texas. The majority of those waiting, 4,120 people, had been waiting more than a year; 627 people had been waiting five or more years. In 2005, 285 people in Texas died while waiting.

The reason for the long wait is a shortage of donated organs, due to medical limitations and a lack of public awareness about organ donation. Some organs, such as kidneys or liver lobes, can be donated from living donors, but many, such as hearts and lungs, must be donated from deceased individuals.

"Not everyone can be a full donor simply because of the way they die," said Michelle Segovia, community relations coordinator for the Texas Organ Sharing Alliance (TOSA).

Only people who die from brain death, rather than cardiac death, are eligible for organ donation.

"The person must die in a hospital and must be on a ventilator," Segovia said.

TOSA is an organ procurement organization (OPO), a nonprofit that obtains consent from donating families then transports donated organs to transplant facilities for recipients. Three OPOs operate in Texas--TOSA in Austin, LifeGift Organ Donation Center in Houston and the Southwest Transplant Alliance in Dallas.

"Only 2 percent of everyone who dies is medically eligible to be an organ donor," said Catherine Burch Graham, director of communications for LifeGift.

That means OPOs start with a small pool of people who are capable of donating, and from that pool, OPOs must obtain consent from the potential donors' next of kin. The organ then must be matched by an anonymous database to someone who is medically suitable.

One donor can save up to eight lives by donating organs, though they usually help four or five, and can improve up to 50 others' lives by donating tissue such as corneas, bone and skin, according to Segovia.

Communicating intent
Obtaining consent can be difficult if people haven't told their families they want to be donors. Families sometimes feel they can't make that decision for the person, said Pam Silvestri, public affairs director for Southwest Transplant Alliance.

"From what I've seen [in] most families, if they've talked about it, [the deceased person has] helped the family through the situation, because they feel like they're carrying out that person's wishes," said Silvestri.

In June 2005, the Legislature made it easier for Texans to make their wishes known by passing House Bill 120, the Donor Education, Awareness and Registry, or DEAR, law, which creates a statewide organ donor registry and a public awareness program.

The online registry will be linked to the state's driver's license and car registration systems, allowing people to indicate their donor intent when they renew their driver's licenses or car registrations.

States with organ donation registries not tied to motor vehicles departments report fewer than 5 percent of residents sign up, compared with states that enable registration through motor vehicles departments, where about 70 percent of residents register, according to David Heneghan of the California Transplant Donor Network.

The Texas Department of Transportation (TxDOT) will collect a $1 voluntary fee to pay for the program and will distribute educational materials. The Texas Department of State Health Services (DSHS) will oversee the registry and education program.

An 11-member group called the Texas Organ, Tissue and Eye Donor Council will help state agencies develop the program and materials. The council will include two public members who are either donors, recipients or members of donor families; a representative from each of the state's three OPOs; a representative from DSHS, the Texas Department of Public Safety and TxDOT; and two transplant professionals--a transplant physician or nurse and a representative of an acute care hospital.

Making things easier
The registry will enable OPOs to check a central database to see if a person has indicated his or her wishes before approaching the person's family for consent, possibly making it easier for families to consent to donation.

Currently, OPOs must rely on families to know a person's wishes or on finding a donor card in a person's wallet or donor sticker on a person's driver's license.

"It will give us the ability to go to the computer if they, in fact, registered, so that if they didn't take the time to tell their family, we'll have actual paperwork to show that they did want to be a donor," said Silvestri.

OPOs don't have access to private organ donor registries such as the Living Bank in Houston, Segovia said.

The registry is not the final word on whether a person donates, however.

"Texas is not a first-person consent state, meaning the decision lies with the next of kin," said Graham.

Families should communicate their wishes so that in a time of crisis, grieving loved ones do not have to rely solely on paperwork from the registry to make their decision, proponents say.

"People should not get the impression that registering should take the place of talking to their family," Silvestri said.

Proponents also hope DEAR's educational component will help educate the public about the value of organ donation.

"I think the education component is the most important thing, period," said Bradshaw.

Enacting donor-friendly laws and creating the registry is important, Bradshaw said, but it's vital to debunk myths about organ donation. A nurse once told him she'd considered registering but thought doctors wouldn't work as hard to save her life if she were registered as an organ donor, he said.

Segovia said educating the public is key to helping people on waiting lists.

"We're much more successful with families giving consent if they've heard about organ donation before," she said.

Getting started
DSHS has until September 1, 2006, to establish the registry. The agency will contract with an outside organization to operate it. DSHS formed the advisory council and is developing the registry, according to Susan Ristine, a DSHS information specialist.

"It's a lot of IT [information technology]," said Ristine. "We're working with our IT department and the council to determine what the exact needs of this registry will be."

DSHS formerly ran the Anatomical Gift Education Program, an education program about organ donation, which DEAR replaces. The agency is optimistic DEAR will increase the pool of potential donors, Ristine said.

"We're excited about it and very hopeful," she said.

OPOs also are excited.Music and fine arts programs often are lumped in with extracurricular activities, even though the programs are curricular by law, said Robert Floyd, executive director of the Texas Music Educator's Association.

"When you consider how few people are eligible to be donors and how many people are waiting, it's crucial," said Graham.

Suzanne Staton