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Bill Aims to Expand Organ Registry, Save Lives

Lawmakers are hoping nonprofit organizations can do a better job of recruiting organ donors and saving lives. HB 2904 would transfer management of the state-run organ-donation registry from an agency to a new collaboration of nonprofits, a shift supporters say will reduce the number of Texans who die while waiting on the list.

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In 2010 almost 600 Texans died while waiting for organ transplants, a byproduct of the state’s paltry offerings on its state-run organ-donation registry.

Now lawmakers are hoping to reverse that trend with legislation filed by state Rep. John Zerwas, R-Simonton. House Bill 2904, if passed, would transfer management of the Glenda Dawson Donate Life-Texas Registry from the Texas Department of State Health Services to a new nonprofit organization. The Texas House passed the bill unanimously last week, and the Senate is expected to follow suit soon.

The nonprofit organization would be created by and include representatives from Texas’ three organ procurement organizations: the Texas Organ Sharing Alliance, the Southwest Transplant Alliance and LifeGift. The federally financed organizations focus their education and outreach efforts on residents in specific areas of the state.

While California and Texas each established their registries in 2006, California’s list is eight times the size of Texas’, Zerwas told lawmakers.

The U.S. Department of Health and Human Services estimates that about 10,600 Texans are currently waiting for organ donations. Nearly half of the patients, about 5,060, are between 50 and 64; about 2,800 are between 35 and 49.

Zerwas, an anesthesiologist, said it is a lack of knowledge about organ donation that has resulted in only 7 percent of Texans registering as donors.

“I think it’s a very passive attempt” at outreach, he said. “When driver’s licenses are issued, there is not a strong promotion” of becoming an organ donor.

Concerned about the low rate of participation, the organ procurement organizations approached lawmakers about taking over the registry — named for a former state representative who was an organ recipient — and creating an independent agency. The organizations have a vested interest in making sure people know about the registry, Zerwas said. More than half the states in the country use nonprofit outfits to manage their registries, according to the House Research Organization’s analysis of the legislation.

The Department of State Health Services would still maintain limited oversight over Texas’ registration efforts. The nonprofit would be required to submit an annual report to the agency on how donated money is spent on the registry’s management and on the production and distribution of educational materials. The proposed legislation would also require the Texas Department of Public Safety to provide educational materials about the registry to applicants for driver’s licenses and personal identification cards. The department would be required to disseminate monthly updated information on Texans interested in being added to the registry.

Mela Perez, the communications manager for the Texas Organ Sharing Alliance, said she was confident the new approach would allow each organ procurement organization to continue focusing on its target audiences, easing communication about a difficult subject.

“We know our various publics, we know our collaboration with the transplant centers, and we know who is on the waiting list,” she said.

Pam Silvestri, communications director for the Southwest Transplant Alliance, said she was confident that the registry would grow if Texans are made better aware of the issue and of their options. Even with its shortcomings, the driver’s license program has been key to the number of donors on the registry, she said. After legislation in 2009 required the Department of Public Safety ask applicants for IDs or driver’s licenses if they would like to be organ donors, the monthly registration rate surged and often exceeds 70,000, compared with fewer than 20,000 on the registry in 2006.

“People want to say ‘yes,’” she said. “They just need to be given an opportunity.”

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