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NBCSL and NHCSL Urge Congress to Appropriate $14 million to Strengthen Support of the Sickle Cell Treatment Act and the Community Outreach Demonstration Project

Assemblyman Felix W. Ortiz, NY NHCSL President

Adopted by the Caucus on June 17, 2006

WHEREAS, Sickle Cell Disease (SCD) is an inherited condition and a major health problem in the United States; and

WHEREAS, SCD affects various ethnic groups greatly impacting American families; and

WHEREAS, in the general population, one in every 4,000 Americans is born with a form of SCD and 2.5 million Americans have the sickle cell trait; and

WHEREAS, SCD affects the lives of thousands who are hampered by physical and mental limitations, as well as their psychological and emotional well-being, and

WHEREAS, the average lifespan of a patient living with SCD is 45 years; and

WHEREAS, although research and treatment are progressing, patients still suffer from debilitating pain, dangerous problems with blood clots and strokes, and therefore much remains to be done to improve the quality of life for SCD patients and their families; and

WHEREAS, funding the Community Outreach Demonstration Project as part of the Sickle Cell Treatment Act will provide much needed newborn screening, community based activities that offer multilingual outreach and supportive services to persons afflicted with the disease and their families and support ongoing comprehensive care for newborns diagnosed with SCD or as carriers of SCD and their families; and

WHEREAS, adequate funding will support education, counseling, research, community outreach and other prevention and treatment services necessary to address this disease; and

WHEREAS, full funding of the Sickle Cell Treatment Act pursuant to PL 108-357, will assist greatly in meeting the needs of all SCD patients who suffer from this disease;

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators and the National Hispanic Caucus of State Legislators strongly urge Congress to fund the Sickle Cell Treatment Act at $10 million and the Community Outreach Demonstration Project at $4 million in the Department of Labor, Health, and Human Services’ and the Department of Education’s Fiscal Year 2007 Appropriations Bill for grants to create 40 treatment centers that will provide medical treatment, education and other services for SCD patients.

Adopted this 17th day of June, 2006 at the NHCSL & NBCSL Promoting Healthy LifeStyles Conference held in Charleston, S.C.

Representative Mary H. Coleman (MS) Assemblyman Felix W. Ortiz (NY)
NBCSL President NHCSL President