| Testimony of the National Kidney Foundation Subcommittee on Oversight and Investigation Committee on Energy and Commerce U.S. House of Representatives June 3, 2003 |
| Presented by Francis L. Delmonico, M.D. Medical Director, New England Organ Bank Director, Renal Transplantation, Massachusetts General Hospital Member, NKF Medical and Scientific Advisory Board |
Good Morning. I am Francis Delmonico, a transplant surgeon at Massachusetts General Hospital, Professor of Surgery at Harvard Medical School, and a volunteer for the National Kidney Foundation (NKF), as a member of the NKF's Medical and Scientific Advisory Board. On behalf of the 30,000 members of the NKF, including several thousand solid organ transplant recipients, we appreciate the opportunity to present testimony today. The NKF acknowledges the support that Congress has provided for organ donation in legislation to assist living organ donors with non-medical expenses such as travel and subsistence, which is included in the recent House passage of H.R. 399, the "Organ Donation Improvement Act of 2003." Surveys of living kidney donors conducted by the NKF have revealed that 1 in 4 respondents experienced a burden with non-reimbursed expenses. We are encouraged that H.R. 399 will enhance the opportunity for live organ donation. Remuneration of expenses related to donation, whether living or non-living, is ethically different than a monetary payment that enriches a person as the motivation to be an organ donor. The National Organ Transplant Act (NOTA) of 1984 prohibits anyone from acquiring, receiving, or transferring a human organ for valuable consideration for use in human transplantation. The NKF supports this legislation because the sale of bodies or body parts would undermine the fundamental values of our society. Payments would exploit the most vulnerable members of our society, with the degree of exploitation influenced by gender, ethnicity, and the social status of the vendor. This exploitation has been the experience of a black market for organs throughout the world. To suggest that the Federal Government or individual States be the proprietor of a market for organs is contrary to the proper role of government. For those global economists who would import a poor person into this country even for the noble reason to feed her family by selling her kidney, the NKF would ask: will these market forces next suggest that our government sanction her selling a part of her liver, then a lobe of her lung? Advocacy for organ vendors (versus donors) also presents an inherent conflict for the physician's professional relationship with a patient. In that relationship, patients are not clients, nor commodities. It should be evident that money as a motivation for "donation" distorts the basis of the physician patient relationship: the trust of each other. The medical decision and procedure that may be forced upon the organ seller and the physician are not by the priority of best care, but rather by the dictate of the sale. Organ sellers are now reported to know the difference between a proper patient-physician relationship and the complicated interaction they have experienced, much to their regret. These unfortunate individuals are not considered as patients but objects of an arbitrary monetary calculation, driven by the going rate in the market place (government regulated or not). Any attempt to assign a monetary value to the human body or its body parts, even in the hope of increasing organ supply, diminishes human dignity and devaluates the very human life we seek to save. Proponents of financial incentives for non-living organ donation assert that demonstration projects should be conducted to determine whether it will increase the organ supply. However, the NKF believes that it is impossible to separate the ethical debate of financial incentives for non-living donation from the unethical practice of selling human organs. Payments for organs could undermine the integrity of the organ donor pool as was the experience of paid blood donations. Furthermore, the advocates of such demonstration projects have given no formula as to how they will make a distinction of endorsing live donor sales, nor have they assured appropriate ethical oversight to prevent potential donor families from perceiving this project as merely a payment for organs. For demonstration projects of financial incentives to be initiated in the United States, it will require a revision of the federal law by Congress. The consequence of a congressional endorsement of a payment for organs would be profound. It could propel other countries to sanction an unethical and unjust standard of immense proportions, one in which the wealthy readily obtain organs from the poor, justified by the citation of congressional sanction. In that reality, the poor person will remain poor but lose health and maybe more than one organ in the process of a government authorized abuse of the poor for the rich. Opposition to payment for organs is not limited to the NKF. The American College of Surgeons has said that compensation of any kind for organs is wrong. The President of The American Society of Transplant Surgeons (ASTS) has testified this morning that the ASTS opposes payments for living or deceased organs. What can we all do now to increase deceased organ donation beyond recent efforts? The NKF commends the approach brought to the Committee's attention today by Robert Metzger of the United Network for Organ Sharing (UNOS) in concert with Joe Roth representing the Association of Organ Procurement Organizations (AOPO): to honor the potential organ donor's wishes. What better way could a mournful family reconcile some of its grief, than to honor their loved one's desire to provide an altruistic gift to individuals in need? The decedent's self determination to donate should not be overruled. However, the NKF also wishes to underscore that while fulfilling donor wishes, the OPO and hospital staff must be sensitive to the needs of families at the time of crisis. The NKF supports the needs and expectations of donor families through its National Donor Family Council (NDFC), which we founded in 1992. With more than 10,000 donor family and professional members, the NDFC represents donors of all organs and tissues. This approach of honoring the donor's wishes was the thrust behind the Uniform Anatomical Gift Act (UAGA) promulgated in every state many years ago and recently endorsed by the Secretary of Health's Advisory Committee on Transplantation. Thus, the NKF joins today with the all of the transplant community to create a timely national momentum to embrace a social responsibility conveyed by the donor authorization initiative. The NKF affirms the right of individuals to authorize the donation of their organs and tissues at death. This alternative approach to buying and selling organs brings an ethical consensus to which we all can devote ourselves. Thank you. I would be pleased to respond to any questions. |


