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REMARKS BY: TOMMY G. THOMPSON,SECRETARY OF HEALTH AND HUMAN SERVICES PLACE: National Conference on Organ Donor Registries, Bethesda, Md. DATE: November 29, 2001
It is wonderful to see all of you from all around the country. Before I begin our discussion, let me thank all of you for traveling to Bethesda and our nation's capital.
The airways of America are safe, and thanks to the new airline security bill the President signed last week, they're getting even safer.
Your presence here shows that you're not letting the aftermath of terrorism weaken your efforts on behalf of something that means so much to thousands upon thousands of Americans - organ donation and transplants. Or to put it more directly - to weaken your commitment to human life itself. This conference is about how we can work together to heal people's wounds, to cure their diseases, and above all, to save their lives.
That commitment did not waver in the wake of the terrorist attacks. U.S. transplant centers, organ and tissue procurement programs and labs continued to provide services throughout the terrible events that began on September 11.
Let me mention just one example, a story about helping victims from the Pentagon attack. Washington Burn Hospital needed skin grafts, but the nation's airplanes were grounded. So two skin plant technicians from the University of Texas-Southwestern Medical Center drove to Washington, D.C., covering nearly 1,300 miles in less than 24 hours.
People are healing today because of their effort.
But I have seen many, many similar acts of compassion in the transplant community. You have my abiding gratitude, and that of the nation.
Today, we turn to you for your tremendous knowledge and expertise to help guide us to new ways to shorten the waiting lists and expand the availability of organs, tissues and eyes for transplant.
The numbers are dramatic . even daunting. Nearly 80,000 people are on the national organ transplantation waiting list. And, in October, the number of people awaiting a kidney transplant topped the 50,000 figure for the very first time.
Each day about 60 people receive an organ transplant, but another 10 to 15 people on the waiting list die because not enough organs are available.
You know I am so passionate about organ, tissue and marrow transplants. It's a passion born in the great state of Wisconsin, but one I am profoundly dedicated to pursuing as Secretary of Health and Human Services.
Dr. Hans Sollinger - the chairman of the transplant division at the University of Wisconsin Hospital - helped fire my passion for this issue by bringing very important, very personal perspectives to the desperate need for donated organs.
We worked together to produce public-service announcements, created a Governor's Medal of Honor for donor families, and passed legislation to require an education program in drivers' ed classes.
We made organ and tissue donation a priority in Wisconsin, and on my very first day in Washington, I vowed it would be a priority for Health and Human Services, as well.
So, on April 17th, I launched the Gift of Life Donation Initiative to reduce the country's critical shortage of donors. We announced a "Workplace Partnership for Life," bringing together employers, unions and other groups in a nationwide network to promote organ, tissue, marrow and blood donation.
We created a model donor card, and have begun work on an organ-donation curriculum and Congressional Gift of Life Medal to honor America's donors.
And, as part of that of the Gift of Life initiative, I called for a national conference on donor registries, to gather information from the experts, to explore the successes and challenges existing registries have experienced, and to consider the merits of various registry models.
You have come here today to take a serious look at these and other issues, and again, I thank you so much for doing so. The results of this conference will help us draw up guidelines for developing and operating a registry or registries.
We know the interest in registries as a way to make donor intentions known is very high. The fact that there already are 20 operational state registries, with others being developed, and two additional registries that cross state boundaries attests to the growing attention to the possibilities registries may offer.
The logic behind them is strong. To ensure that a donor's wishes are carried out, we need an electronic registry of organ and tissue donors, easily accessible to those involved in the procurement process.
We know about the problems caused when a donor card is unavailable, perhaps taken away at the scene of an accident or misplaced during a time of shock, grief and confusion. Registry data compose what essentially is an electronic donor card, but available all the time.
Yet many, many differences have emerged in the creation and operation of registries. Is the Motor Vehicles office the best place to base that registry, or is it the Health Department? Just exactly what kind of data should we collect? How can we ensure the privacy of the information that's collected?
There are sensitive questions involved too, specifically, whether a registry should serve as an advance directive, giving primary consent to the wishes of the deceased. I know this is an important issue that faces the transplant community in the 21st Century.
You are here today because you have different experiences working in the states and, for some of you, with your own registries. These experiences and insights will inform us as we seek answers to all these questions, answers that are vital to sound public policy.
At the federal level, we are obviously interested in your views of the merits of a state-based system and a national one. The ability to share information across state lines is of critical importance, and we must determine if those goals can effectively accomplished by staying with a state-based approach.
In all these discussions, I want to hear from you about the role the federal government should play. We are partners in this effort, and, by working together, we can accomplish great things.
And in these discussions, I encourage all of us to think about the long-term. We all have daily challenges that demand immediate attention. But you will aid our partnership by thinking about how the world - and organ and tissue transplant needs - will look five, 10, 20 years down the road.
Whether it's incredible medical breakthroughs thanks to biotechnology or a changing health-care system that operates in new ways, we will be facing conditions that are bound to affect the need for and availability of transplant organs and tissue. Let's ponder . and prepare . for that future.
It used to be that if you saw me on television, odds were I was promoting donations. Now, I'm probably talking about anthrax, or smallpox, or vaccine procurement.
Rest assured, I would much rather be discussing the Gift of Life than the threat of bioterrorism. Yet we live in a changed world, a world that places new and unexpected demands upon all of us.
But you can be certain that my commitment to this important cause is as strong as ever. Organ and tissue donation is a priority for H-H-S and will remain a priority.
Just last month we announced new grants totaling $3.3 million to a dozen organizations, a $10 million, three-year initiative. These new grantees join 22 ongoing HHS-funded projects looking at ways to increase family consent for donation, motivate individuals to declare their intent to donate, and then share that decision with family members.
Some of the grantees are studying comprehensive, statewide organ and tissue donor registries. Their efforts will benefit from the information we gather from this important conference.
Our commitment will continue. Because in the end, we all understand that this is a matter of health and life for our family members, colleagues, friends and all the good people in the world. You can all tell powerful stories, I am sure, of pain and loss translated into hope for renewed life.
This month in Fresno, California, members of the Hispanic community gathered at a local church on National Donor Sabbath to remember 19-year-old Maribel Cordova. Maribel had received an identification card this year and told her mother she wanted to become an organ donor.
Two weeks later, a damaged blood vessel in her head tragically cut her life short.
Because of Maribel's selfless act, others lived. A 35-year-old man from Northern California received her lungs. A 66-year-old Southern California woman got her liver. Maribel's left kidney was placed in a 50- year-old Pennsylvania woman, and her right kidney went to a 73-year-old woman from Oklahoma.
As a local transplant outreach coordinator said at the church services, "Don't take your organs to heaven. God knows we need them here." And, in moving words we have all come to know, Maribel's mother said, "She's still alive in those people."
These are the human experiences of hope out of loss . of life out of death. that touch and motivate us.that drive us to do everything within our power to promote organ and tissue donation. Through education, outreach, science and the vitally important work of people like you, we will reach that future when organ donation is, quite simply, a fact of life.
Thank you for all your efforts, and I wish you all the best for a successful conference.