January 2006 Advocacy Update

Bill to Unite Cord Blood and Bone Marrow Networks Signed into Law
The Stem Cell Therapeutic and Research Act (PL 109-129) was signed into law by President George W. Bush on December 20, 2005. It calls for the National Marrow Donor Program to merge with a new umbilical cord blood bank network and sets up a system where this network collects and maintains human cord blood for future transplantation and research needs. The Senate approved the bill (HR 2520) on December 16, which followed House passage of this measure on May 24 along with the Stem Cell Research Enhancement Act (HR 810).

Supporters of embryonic stem cell research had hoped that the Senate would also pass HR 2520 at the same time as HR 810, as the House did on May 24. However, embryonic stem cell research remains a highly controversial issue in the Senate. An agreement between Senator Arlen Specter (R-PA) and Senate Majority Leader Bill Frist, MD, (R-TN) provides that HR 810 will be a priority item for the Senate to consider in early 2006.

$2.2 Million in Funding for Sickle Cell Treatment Grant Program in FY 2006
The fiscal year (FY) 2006 Labor, Health and Human Services (HHS), and Education (Labor-HHS) Appropriations Conference Report (PL 109-149) includes $2.2 million to fund the grant program in the Sickle Cell Disease Treatment Law (PL 108-357). Sickle cell disease (SCD) champion Senator James Talent (R-MO) worked with Senate Appropriations Committee Chair Thad Cochran (R-MS) to ensure that funding for SCD was included in the final version of the bill.

The Sickle Cell Treatment grants will be administered by the Health Resources and Services Administration in HHS which will award the funding to Centers of Excellence around the country that specialize in SCD treatment and research. The funding will be used for the education, treatment (i.e., genetic counseling and testing), and continuity of care for individuals with SCD, for training health professionals, and to identify and secure additional federal funds to continue SCD treatment.

In FY 2006, NIH will operate with $30 million less than FY 2005
In the final version of the FY 2006 Labor-HHS funding bill (PL 109-149), the National Institutes of Health (NIH) received $28.62 billion, a $253 million or 0.9 percent increase over last year. However, an across-the-board 1 percent rescission on all FY 2006 discretionary spending was also approved. For NIH, the cut means a loss of approximately $280 million in FY 2006. With NIH’s FY 2006 increase only $253 million, this year the Institutes will be operating at a funding level $30 million below the FY 2005 enacted level.

The FY 2007 budget debate will commence on February 6 when President Bush releases his FY 2007 federal budget proposal. Medical research advocates anticipate that the Bush Administration will offer NIH only a small increase, probably in the range of 1-2 percent.

If you have questions, or need more information, please contact the ASH Government Relations and Practice Department at 202-776-0544 or grassroots@hematology.org.