About TRIOMission StatementStatement of the Transplant Recipients International Organization, Inc. before the Honorable Donna Shalala Secretary of the Health and Human Services on the Amended Rule regarding the Organ and Procurement and Transplant NetworkDecember 10, 1999 Madame Secretary, I am honored to have this privilege to speak today on behalf of those who these sessions the past eighteen months have been about -- people waiting for an organ transplant. As a heart transplant recipient of 11+ years, I also would like to thank you and this department for all the hard work and effort put forth on behalf of those waiting. As I began to collect my thoughts and put them down I realized that I was mostly re-hashing the events and frustrations of the past two years. Certainly this gathering has heard it all, so why "preach to the choir" as they say. As our name implies, Transplant Recipients International Organization, or TRIO as we are better known, is mostly made up of transplant recipients. Our members also include candidates, donors and donor families as well as health professionals, but mostly recipients. We have been there. We know what it's like to be told your only chance to continue living is a transplant. After that shock, you find you are now waiting, and waiting and waiting. No one knows the feeling of the process like a recipient. Fifteen years ago, the National Organ Transplant Act (NOTA) established the framework for a system to allow our citizens to obtain an organ transplant in a fair manner. TRIO has been at the forefront asking for improvements to this system and we have supported the changes proposed in the Rule. This is not a system for doctors. It is not a system for transplant centers. It is a system for patients. In a system for patients, why wouldn't you want an allocation system that best insures that the neediest patient, subject to sound medical judgement, will get that organ today? In a system for patients, why wouldn't you want some basis of standardized criteria being used to list patients? In a system for patients, why wouldn't you want standardized criteria being used to change listed patients' statuses? In a system for patients, why wouldn't you want more public representation -- including patients -- on the Board of the OPTN? In a system for patients, why wouldn't you want some oversight over the system? Who better than the Secretary of Health and Human Services? How much higher can you get in the health hierarchy in this country? In a system for patients, how could you allow states to keep their donated organs for their residents first, regardless of their relative need? In a system for patients, how could you spend millions of dollars fighting improvements to this system, rather than devoting those resources to finding ways to improve organ donation rates? Nearly 70,000 people currently waiting and the tens and tens of thousands who will be placed on that list in the future deserve better. If you, or a loved one, were one of those thousands, you would demand it. I guarantee it. In a system for patients, how could you? Bruce Weir |
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