NAPDN Position Statement on
A National Paired Donation Program

Requisites for Establishment of a National Paired Donation Program
  1. A national paired donation program should be established by a legislative mandate by Congress.
  2. The national paired donation program should be established only after a majority of all US kidney transplant programs consent to establish the program. Kidney transplant programs should indicate that they are sufficiently educated about paired donation prior to providing consent.
  3. Prior to passage of legislation establishing a national paired donation program, Congress should conduct an extensive evaluation of the current status of paired donation programs and matching technologies. This evaluation should include public hearings that allow input by the public and all interested parties.
  4. Congressional legislation for a national paired donation program should require the national paired donation program be administered by DHHS under a grant or contract to a private or public entity (in a manner similar to that stipulated by NOTA). The legislation should include provisions of adequate federal funding for: a) education of transplant professionals and kidney disease patients regarding paired donation, b) transplant program personnel support for paired donation and desensitization programs, c) increased data submission requirements, d) electronic transfer of patient data from existing computer-based paired donation programs, e) future technological development of computer-based matching software, and f) increased quality assurance monitoring requirements.
  5. The national paired donation program should include an enforcement capability to assure compliance with established policies.
  6. The governing structure of the national paired donation program should consist of a minimal bureaucracy, with the intent that it be agile so as to be able to respond quickly to new developments in policy and technology.
Process of Establishment of a National Paired Donation Program
  1. Congress should have adequate modeling data available to assess the logistic and pragmatic considerations for the passage of paired donation legislation, including: 1) inter-programmatic issues at the individual transplant program level, 2) logistical issues regarding prelisting histocompatibility testing, 3) financial impact of additional crossmatch testing, and 4) eligibility criteria for patient entry.
  2. The selection process for the contractor for the national paired donation program should be transparent and based on a comprehensive evaluation of multiple factors, including experience, creativeness, ethical standards, and educational ability.
Assurance of Patients' Interests
  1. The primary criterion for development and implementation of a national paired donation program is to protect patient's interests including autonomy and equity. The mandate should assure that all policies address the protection of patient interests at all times.
  2. The national paired donation program should include monitoring and review processes to assure that patients have appropriate access for matching with all available listed patients.
  3. Electronic transfer of patient data from paired donation programs already in existence should be provided prior to clinical initiation of a national paired donation program.
A Success Story: The Vollmars and the Meyers
Daniel Vollmar (second from the left in the picture) wanted to donate to his mother, Josephine (on the left in the picture), but Josephine developed immunity to Daniel's tissues when she was pregnant with him. Rose Meyer (on the right in the picture)  wanted to donate to her husband, Paul, but her blood type (blood type A) was not compatible with Paul's blood type (blood type O).  The Meyers were entered into the PDC web-based computer matching program by their transplant coordinator at the Christ Hospital in Cincinnati, and the Vollmars were entered by their  transplant coordinator at the Medical University of Ohio.

After they were matched by the computer, and  crossmatching testing was performed to assure sure that Daniel's kidney was compatible with Paul and that Rose's kidney was compatible with Josephine.   After these tests were completed, they met each other (see CNN story "A Vital Trade" below. 

A few weeks later, in a paired donation procedure, Rose donated her kidney to Josephine, and Daniel donated to Paul. Josephine would have likely waited three years or more for a kidney on the deceased donor wait list. Paul never had to go on dialysis, where he would have also waited for three or more years.  All four are doing well today, and have become close friends because of the extraordinary experience they had in the paired donation procedure.

 
Original PDC 30 centers
Great Plains PDC 5 centers
New Jersey PDC 6 centers
SouthEast PDC 15 centers
SouthWest PDC 22 centers
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