National Cord Blood Program
The Cord Blood Stem Cell Act of 2003 was introduced into the U.S. Congress in the House of Representatives as HR2852 on 24 July, and the Senate introduced a companion bill 2003 S1717 on 3 Oct. 2003.
While lobbying for this bill, doctors repeatedly told Congress that an inventory of 150,000 cord blood donations would be enough to supply the transplant needs of 90% of the American public. As of 30 Sept 2012, the combined inventory of U.S. public cord blood banks that participate in the NMDP network was about 163,000 donations (source: HRSA Advisory Council meeting 16 May 2013). The current funding situation is that these public cord blood banks still need federal grants to survive, while Congress is pushing them to become financially self-sufficient. But back to the events of 2003-2005:
The 2003 legislation to establish a National Cord Blood Program became incredibly bogged down in rivalry between the NY Blood Center (NYBC) and the National Marrow Donor Program (NMDP), both of whom wished to control the program. The NY Blood Center even renamed their website www.NationalCordBloodProgram.org.
To clarify these issues, in Jan 2004 Congress commissioned an Institute of Medicine (IoM) study to make recommendations on the ideal structure of a national cord blood program, and that study was published in April 2005.
Meanwhile, between Jan. 2003 and June 2004, the NY Blood Center and their ally Thermogenesis (Nasdaq: KOOL) spent $330,000 on lobbying, according to the U.S. Senate Office of Public Records (SOPR). During the same time period, the NMDP spent $860,000 on lobbying, according to the same data base.
In March 2004, re-authorization of the budget for the NMDP, an event that happens once every five years, was stalled for the first time. Cancer patients and medical societies such as ASBMT launched frantic campaigns urging re-authorization. One sentence in the funding bill had broadened the term "bone marrow" to include "any other source of hematopoietic progenitor cells". This phrase was intended to cover collection of blood-forming stem cells from peripheral blood and cord blood. Instead, opponents of the bill, such as Senator Sam Brownback (R-KS), seized on this phrase to claim that the NMDP intended to take over all sources of stem cells, including embryonic stem cells. As a result, the NMDP found themselves under fire from religious groups who oppose the use of embryonic stem cells.
In Feb. and March of 2005, the NYBC lobbied Congress to introduce another set of Cord Blood Stem Cell Acts, HR596 and S681, which are basically replays of the 2003 legislation that triggered the IoM study. Finally, on 14 April 2005 the Institute of Medicine released their report, Establishing a National Hematopoietic Stem Cell Bank Program. The IoM did not side with either the NYBC or the NMDP, but set a course down the middle. Thanks to the calming effect of the IoM report, on 24 May 2005 the NYBC and NMDP reached a compromise and the House of Representatives passed HR2520 (by a vote of 430 to 1), "The Stem Cell Therapeutic and Research Act of 2005". A companion bill, S1317 was introduced to the Senate. The bill HR2520 was a marriage between the stalled NMDP re-authorization (HR3034) and the NYBC proposal for a national cord blood program in parallel to the NMDP (HR596). HR2520 was passed under a suspension of rules which only occurs if there is prior agreement by interested parties. The Senate version S1317 was passed on 16 Dec. 2005 by voice vote. President George W. Bush signed it into law on 20 Dec 2005.
The bone marrow donor registry and cord blood inventory have parallel status and the umbrella organization above them is officially called the "C.W. Bill Young Cell Transplantation Program".