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Legislative News Summary:

History.  In 2002, public cord blood banking suffered from slow development, mostly due to the relatively large investment needed to fund sufficient inventories.  NCBP understood the need to improve these conditions and undertook a concerted effort to inform the Congress of the potential of cord blood to overcome the limitations of the adult donor source.  As described by a GAO report, (General Accounting Office. Report to Congressional Committees. Bone Marrow Transplants Despite Recruitment Successes, National Program may be Underutilized. October, 2002) the National Marrow Donor Program (NMDP) was underutilized and able to provide matched tissue for marrow reconstitution only to a small percentage of the patients who applied, particularly small for those of ethnic minority groups.  NCBP decided to request from Congress the enactment of legislation to fund the establishment of a network of cord blood banks to collectively collect a large, ethnically balanced, high quality inventory of cord blood units.  Through these efforts, the Cord Blood Stem Cell Act of 2003 was introduced and elicited considerable interest and support in both Houses.  Funds ($10 M) were appropriated.  Congress was uncertain of the best method for implementing the legislative intent and requested a study of the subject from the Institute of Medicine of the National Academies.  The study, published in April (Committee on Establishing a National Cord Blood Stem Cell Bank Program. Cord Blood: Establishing a National Hematopoietic Stem Cell Bank Program. Institute of Medicine, National Academies Press, 2005.).  Following the release of the IoM report, new stem cell bills were introduced into the 2005 session of Congress (H.R. 2520 & S. 1317).  These bills, which re-authorized the bone marrow budget of NMDP and established a parallel cord blood program (the Cord Blood Stem Cell Act of 2005) were redrafted as the Stem Cell Therapeutic & Research Act of 2005 and passed in the House (vote: 431-1) and later in the Senate (on 12/17/2005, by unanimous vote).Three days later, President George W. Bush signed it into law as Public Law 109-129.  It became the "C.W. Bill Young Cell Transplantation Program

Implementation.  The Cord Blood Stem Cell Act of 2005 is managed by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS).

The Stem Cell Act 2005 includes:

  • The C.W. Bill Young Cell Transplantation Program, which encompasses the National Marrow Donor Registry, operated by the National Marrow Program (NMDP), now, the Be The Match Registry and
  • The National Cord Blood Inventory (NCBI).  The NCBI cord blood banks, under separate contracts from HRSA, will collect and store 150,000 new, high quality, cord blood units to treat patients. The NCBI banks will also provide cord blood units for research studies.
  • The law also requires an Advisory Council on Blood Stem Cell Transplantation, whose role is to make recommendations on issues concerning the Program, to the Secretary of the Department of Health and Human Services (HHS).

The C.W. Bill Young Cell Transplantation Program, operated by NMDP, consists of:

  • The Single Point of Access (SPA) - which searches the Cord Blood and Bone Marrow Donor Registries for matched unrelated donors and units and the Office of Patient Advocacy (OPA), which provides support for patient families.
  • The Bone Marrow Coordinating Center (BMCC) recruits potential marrow donors and helps the matched donor undergo the donation process.
  • The Cord Blood Coordinating Center (CBCC) helps participating banks, including banks that hold NCBI contracts, to increase cord blood donations and oversees the distribution of NCBI and other cord blood units and
  • The Stem Cell Therapeutic Outcomes Database (SCTOD) is operated by The Center for International Blood and Marrow Transplant Research® (CIBMTR) and collects data to monitor the results of bone marrow and cord blood transplantation. It also maintains an electronic outcomes database of scientific information about allogeneic bone marrow or cord blood transplantation, for researchers and health care professionals Performs research to help improve the prognosis of hematopoietic cell transplantation.

The four Programs, together, must accomplish the overall goals of:

  • Coordinating a national network that links transplant centers with the Program's donor centers and cord blood banks.
  • Setting up and maintaining an electronic information system to perform searches and facilitate transplants.
  • Collecting medical data and using research to improve Program procedures and help patients.

 

Click here to read the full text of the "Stem Cell Therapeutic and Research Act of 2005" (Public Law 109-129--December 20, 2005)


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Katherine Marguerite Sutter with her dad

Katherine Marguerite Sutter (above) with her dad before her transplant.
Below, Katherine on her third transplant anniversary day.


Katherine on her third transplant anniversary day
 

Cord blood is an investigational product not licensed by the FDA.