House bill reauthorizes national marrow donor registry

According to the group, the reauthorization includes the National Registry for adult donors of bone marrow, peripheral blood [adult] stem cells, and umbilical cord blood units; the Office of Patient Advocacy; and the Stem Cell Therapeutic Outcomes Database. It would also reauthorize the National Cord Blood Inventory, which provides grants to public cord blood banks to assist them in collecting donated cord blood units that are then listed on the National Registry.

The legislation, according to a National Marrow Donor Program summary, would:

• Recognize that medical consensus supports a national inventory of more than 150,000 cord blood units by modifying the national goal;
• Extend the term of initial and contract extensions from three to five years, making it easier for banks to engage in long-term relationship building with birthing hospitals;
• Require cord blood banks to establish a plan for increasing cord blood unit collections and/or expand the number of collection sites with which they work;
• Require cord blood banks to provide a plan for becoming self-sufficient, a core tenant of the original authorizing legislation;
• Clarify the minimum timeframe for maintaining NCBI cord blood units on the National Registry;
• Correct the definition of “first-degree relative”;
• Authorize $23 million for FY 2011 through FY 2014 and $20 million for FY 2015 for the NCBI (when combined with the funding levels for the program, the overall bill does not increase federal spending);
• Allow the Health Resources and Services Administration to allocate funds appropriated in one year in the following year, as needed, for both the program and the National Center for Biotechnology Information (NCBI);
• Update the annual reporting requirements for the program;
• Enhance the studies, demonstration programs, and outreach projects related to cord blood donation and collection to include exploring innovative technologies and novel approaches, and expanding the number of collection sites;
• Update the confidentiality language that applies to adult donors to make it consistent with the requirements for cord blood donors and existing federal and state privacy laws;
• Authorize $30 million for FY 2011 through FY 2014 and $33 million for FY 2015 for the program (when combined with the funding levels for the NCBI, the overall bill does not increase federal spending);
• Require a GAO report due one year after enactment to review studies, demonstration programs, and outreach efforts for the purpose of increasing cord blood unit donation and collection for the NCBI to ensure high-quality and genetically diverse inventory of cord blood units.