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Prepared Witness Testimony The House Committee on Energy and Commerce
Assessing Initiatives to Increase Organ Donations
Subcommittee on Oversight and Investigations
Mr. Joseph Roth
INTRODUCTION Chairman Greenwood and Members of the Subcommittee, I appreciate the opportunity to appear before you and discuss an issue that literally is of life and death importance for the tens of thousands of Americans waiting to receive organ transplants. I am Joseph Roth, President and CEO of the New Jersey Organ and Tissue Sharing Network, the organ procurement organization (OPO) serving New Jersey. I am testifying today in my capacity as the President Elect of the Association of Organ Procurement Organizations (AOPO), the organization representing all 59 federally-designated OPOs in the country. PROBLEM OF ORGAN DONATION SHORTAGE AOPO applauds the Subcommittee's leadership in holding today's hearing to examine how organ donation can be increased. Even though our country is blessed with the best medical technology and doctors, for a patient in need of an organ transplant, it seems almost nothing can be done to reduce the anguished wait for an organ to become available. Far too often, time runs out before an organ can be found, if at all. Over 80,000 people wait to receive organ transplants. While 63 people receive transplants everyday, and thus, a second chance at life, another 17 people die on the waiting list without getting that chance simply because not enough organs are available. The shortage of life-giving organs is a serious and chronic problem that will not be resolved without meaningful attention from policymakers. Although there has been an increase in the number of organ donors in recent years, the rate of increase has not kept pace with the need for donated organs. Studies have found that less than 50 percent of potential eligible donors actually become donors. As a result, there is significant potential for increased organ donation to take place and for an increased number of lives to be saved. We simply need thoughtful policies to take advantage of this potential. APPROACHES TO INCREASING ORGAN DONATION No single approach is sufficient by itself to achieve large-scale increases in organ donation. The OPO community, frequently in partnership with the Department of Health and Human Services (HHS), transplant-related organizations, and others, instead supports a multitude of different but strategic approaches to address the national organ shortage. I would like briefly to highlight a few of them: 1) First, as part of a national Donation Initiative, Secretary Tommy Thompson and HHS have launched a new program to implement "best practices" in organ donation at the 200 hospitals with highest potential for organ donation. The program is designed to increase organ donation rates at these hospitals to 75% of eligible donors. Since our national study indicates that, with some local exceptions, 80 percent of eligible donors can be found in 20 percent of the nation's hospitals, primarily large hospitals, we believe that this effort grounded in shared accountability for organ donation needs broad-based support and we look forward to promising results from this major initiative. 2) Second, HHS and the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) are acting on recommendations by the Secretary's Advisory Committee on Transplantation to establish policies such that a hospital's failure to identify a potential organ donor and/or refer the donor to the OPO in a timely manner - as required by law - would be considered a serious medical error. Major national meetings have been planned to address how hospitals with these "missed organ donation opportunities" would face the appropriate review, comparable to what currently is expected for major adverse healthcare events. 3) Third, the placement of OPO staff in hospitals to be onsite organ donation coordinators is showing tremendous promise. The OPO coordinators work directly with health care professionals and families of potential donors to help them understand the importance of donation. Hospitals in which OPO coordinators are in place have experienced a significant increase in organ donation, including in inner city settings where higher consent rates have been difficult to sustain. AOPO strongly endorses federal legislation and funding to place OPO organ donation coordinators in all large hospitals. 4) Finally, the advancement of Donor Rights legislation by all States is critical for giving organ donors control over their decision to donate. Eligible individuals who have declared themselves as donors deserve to have their wishes respected, with no further authorization from family members necessary. Donor Rights legislation would ensure that an individual's desire to give the "gift of life" is carried out. AOPO believes that advancement of this approach, with attention to public outreach, is a vital component of increased donation. We also want to assure the public that sensitivity to the needs and concerns of donor families should not be diminished. We intend to work closely with the National Conference of Commissioners on Uniform State Laws on donor rights legislation, and other matters of significant import, such as strengthened legislation regarding collaboration between OPOs and Medical Examiners and Coroners. CONCLUSION In conclusion, policymakers and the public alike need to confront the challenge of the organ shortage. Over 80,000 Americans are on the transplant waiting list. They and the thousands more who will need transplants in the future deserve no less than a sustained, broad-reaching effort to increase donation. Approaches such as the ones I have described today give us hope but are useless unless they are discussed and acted upon as part of national policy. We must work together to ensure that no one will be denied the second chance at life given by a donated organ. Once again, thank you for the opportunity to testify today. I will be happy to answer any questions.
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