CAAF Update: CAF Urges Action

March 31, 2015The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis and Katie Schubert

CAF Backs Funding Increase for Key Health Agency

In a letter to top congressional appropriators, CAF joining with a coalition of 170 national organizations called for boosting funding for the Health Resources and Services Administration (HRSA), the federal agency that oversees the National Hereditary Blood Disorders program.

This month, the Friends of HRSA Coalition wrote to the chairmen and ranking Democrats on the House and Senate Labor-HHS-Education appropriations subcommittees that fund HRSA, including its Maternal and Child Health program. The letter noted that “while the U.S. has the potential to have one of the healthiest populations in the world, too many families still face barriers to basic, quality health care.”

HRSA’s programs cover a broad swath of health needs. In addition to the Maternal and Child Health program, HRSA’s portfolio includes training and support for the delivery of primary care services and serving about one-half of the 1.1 million people living with HIV/AIDS.

The Maternal and Child Health program serves over 42 million vulnerable women and children. Readers may recall that this program is currently supports a demonstration project to improve the identification of individuals with thalassemia and access to quality medical services including the development of recommendations for thalassemia-related screenings, diagnosis, education, regular blood transfusion and treatment for iron overload and medical complications resulting from chronic transfusion therapy.

Congress Urged to Remove Barriers to Patient Access

CAF and other organizations are urging Congress to give rare disease patients equal access to lifesaving and life extending therapies.

Earlier this year, the House Energy and Commerce committee announced what it calls the 21st Century Cures initiative, legislation that will take a comprehensive approach to accelerating the pace of cures in America. The House panel promises to address the full arc of this process – from the discovery of clues in basic science, to streamlining the drug and device development process, to unleashing the power of digital medicine and social media at the treatment delivery phase.

In a March 17 letter noting that many rare disease patients cannot always access approved therapies, CAF and dozens of patient advocacy organizations urged Congress to pass legislation that will prohibit discriminatory utilization control practices by state Medicaid plans that would ensure: equity for individuals with rare diseases and conditions; physician and patient treatment determination; innovation of and access to individualized treatment; and continuity of care.

Head of CDC’s Blood Disorders Division Leaving

Earlier this month, CAF learned that Chris Parker, Ph.D., acting director and deputy of the Division of Blood Disorders is leaving CDC’s National Center on Birth Defects and Developmental Disabilities.

Craig Hooper, Ph.D., who currently leads the Division’s Laboratory Research Branch will step in as acting director. Dr. Hooper has been with the Division for 27 years, involved primarily in translational research in hemostasis.

CAF congratulates Dr. Hooper on his elevation to this position and is looking forward to working with him in the months ahead.

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