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New York, NY
February 18, 2005
Organ Donation/Assistance for Living Donors
President Bush signed H.R. 3926, the Organ Donation & Recovery Improvement Act, on April 5, 2004 (Public Law 108-216). The National Kidney Foundation (NKF) worked with the sponsors to help craft the final bill. Despite the steady increase in organ donation (primarily from living donors), the need for organs for transplantation continues to far outweigh availability. There are almost 85,000 Americans on the waiting list to receive an organ as of April 2004.
A key provision of the legislation establishes a federal grant program to provide assistance to living donors with travel and subsistence expenses and incidental nonmedical expenses incurred by individuals toward making living organ donations. This provision has been an NKF priority. The NKF believes in the principle that living organ donors should not personally bear any financial costs associated with donation. Moreover, the NKF maintains that removing the financial barriers associated with donation could possibly expand access to transplantation for members of lower socio-economic groups who are often precluded from considering living donation.
The legislation also grants money to states for organ donor awareness, public education and outreach activities designed to increase the number of organ donors. It will also award grants to organ procurement organizations and hospitals to establish programs coordinating organ donation activities to increase the rate of organ donations for such hospitals. Other provisions of the legislation require the Secretary of Health and Human Services (HHS) to establish a public education program to increase awareness about organ donation and the need to provide for an adequate rate of donation and to support the development and dissemination of educational materials to inform health care professionals about organ, tissue, and eye donation issues. H.R. 3926 authorizes the Secretary to establish mechanisms to evaluate the long-term effects associated with living organ donations.
The bill also requires the Secretary of Health and Human Services to submit a report to Congress that evaluates the ethical implications of proposals to increase non-living donation, which could include financial incentives. However, it does not authorize demonstration projects to examine whether financial incentives would increase non-living donation. A previous Senate version of the legislation would have permitted such demonstration projects, but a successful advocacy effort by NKF resulted in the removal of the provision. Many transplant societies and organizations supported the demonstration authority (because of their belief that incentives could ease the organ shortage or because they believe the issue should be studied and resolved).
Research conducted by the National Kidney Foundation’s Council of Nephrology Social Workers (CNSW) indicates that 25% of potential donors are hesitant to donate because of potential financial burden incurred by the living donor and that a similar percentage of living donors regretted their decision because of the economic consequences.
The National Kidney Foundation applauds Congress for taking the step forward to assist living organ donors with financial burdens often associated with donation. NKF will continue to support efforts aimed at increasing the donor pool.
In addition to payment for travel and subsistence, the Foundation is a strong supporter of organ donor leave policies. Modeled after federal law, for federal employees, many states have begun to offer state employees up to 30 days paid leave for serving as a living organ donor; this leave is considered separate from any annual or sick leave already accrued by an employee.
If you have questions about H.R. 3926, about financial assistance for living donors, organ donor leave or other issues related to organ donation and transplantation please contact the NKF Government Relations Division at (800) 889-9559. To view a copy of H.R. 3926, visit http://thomas.loc.gov