ASH President Urges Federal Funding of Sickle Cell Data Collection Program

(WASHINGTON, October 3, 2019) — Yesterday, ASH President Roy Silverstein, MD, of the Medical College of Wisconsin asked members of the United States Senate Committee on Appropriations to adopt the provision in the House-passed fiscal year (FY) 2020 Labor, Health and Human Services, Education, and Related Agencies appropriations bill that dedicates $2 million for a federal program to collect data on the complications, treatments, and health outcomes of people with sickle cell disease (SCD).

Through legislation passed in December 2018, the Centers for Disease Control and Prevention (CDC) Sickle Cell Data Collection Program was authorized to award grants to states, academic institutions, and non-profit organizations to gather information about SCD. Last week, CDC announced it had secured limited funding for the program for one year.

“ASH commends the United States Department of Health and Human Services and CDC for continuing to demonstrate their commitment to the SCD community by finding funds for the Sickle Cell Data Collection program,” said Dr. Silverstein. “However, this funding is limited to one year. We asked federal appropriators to secure sustainable funding in FY 2020 and beyond for this vital program.”

Many people living with SCD are unable to access quality care and have limited treatment options. Data collection will improve understanding of the sickle cell patient population and, in turn, inform efforts to establish public health programs and practices to improve and extend the lives of people with SCD.

Although the program was authorized last year, funding from Congress has not yet been appropriated for its implementation. Limited funding from the CDC Foundation has allowed two states to enroll in the program to date. These states, California and Georgia, cannot offer a full picture of the issues faced by people with this disease since they represent about 10 percent of the nation’s total SCD population. The new CDC funding will bring the total number of states in the program to nine, but it cannot be overlooked that this temporary funding is limited to one year.

“Last month, members of ASH leadership and I went to Capitol Hill to urge lawmakers to recognize the importance of funding this program. Yesterday, we took our efforts one step further to sustain and expand the program,” said Dr. Silverstein. “For nationwide SCD data collection, outreach, and education programs to become a reality, funds must be appropriated to CDC beginning in fiscal year 2020. ASH looks forward to continuing to work with Congress to meet this goal.”

Dr. Silverstein’s letter to the Senate can be read in full here.

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The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 50 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly in print and online. In 2016, ASH launched Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.