June 17th Governor Perry signed HB2904 into law. This bill changes the administration of the Glenda Dawson Donate Life-Texas Registry. The Texas Department of State Health Services has been managing the registry. HB2904 requires that the State contract with a non-profit organization to maintain and administer the registry. The nonprofit organization must include representatives from each of the three federally designated organ procurement organizations (OPOs) in the state of Texas (LifeGift, Southwest Transplant Alliance, and Texas Organ Sharing Alliance).
This is a good thing.
Texas is the second worst state in the nation for registered organ donors. Only Vermont is worse. This chart is based on the 2010 National Donor Report Card by Donate Life America and data from the Federal Organ Procurement and Transplantation Network.
While the Texas Registry has been growing only about 9% of the adult population in Texas is registered. There are 10,688 Texans are waiting for organ transplants.
5,049 or 41% of the waiting list are Hispanics. Three quarters (9,056) are waiting for kidneys. Nearly half needing kidneys are Hispanics, 4,330 or 48%. Most people wait for kidneys 1-2 years in Texas with 2,214 waiting 3 to 5 or more years. 6,702 people died waiting for organs in Texas over the last 15 years.
So yes, change to help donor registration in Texas is a good thing.
The new law details how the registry is to be maintained including strict specifications to protect individual privacy. For example, it specifies registration data may not used for fundraising. In my opinion the registration should be used however for marketing analysis to determine how to best improve registration rates. Numerous studies show that Hispanics register and consent to donation at a lower rate than Caucasians. Our registration data should be correlated with research on organ donation behavior to determine how to best spend our energy and our very limited funds.
Funding for the new law is provided by the by the optional $1 fee paid during motor vehicle registration. This is not a lot of money I imagine. The law requires the funds to be disbursed for maintenance and “desiging and distributing educational materials for prospective donors”. Education is to cover transplant and donation laws, procedures to become a donor, solicitation of broad-based input, possible training of DPS, TXDOT, health care providers and attorneys about organ donation. The non-profit agency is to encourage attorneys to provide organ donationn information, education in medical and nursing schools.
Wow. That is a lot of education to accomplish. However, nothing is said in the law about marketing the registry. If you compare what other states do, they market the registry (Utah, Montana/Washington, and Pennsylvania). In a presentation about donor registration in Region 7, it is clear that we have to “aim higher than awareness” we have to become marketers.
I sincerely hope the non-profit association contracted to run the Texas Donor Registry will be a creative marketer and advocate for the Gift of Life. And I hope the State of Texas will fund it or allow it to seek funding with Foundations and partners (see Alaska’s donor registry partners).