An Advocacy Win for Sickle Cell Disease

An Advocacy Win for Sickle Cell Disease

As part of a multifaceted initiative to address the burden of sickle cell disease (SCD) in the U.S. and globally, ASH has made expanding and strengthening federal SCD programs a priority. Along with support from patient groups and other medical associations, the Society played a key role in a 2018 advocacy win for the SCD community – a major triumph in the current political climate considering that so few bills receive bipartisan support and become law.

2018 ASH President Alexis A. Thompson, MD, MPH, presents Rep. Danny Davis (D-IL) with the ASH
Public Service Award for his work on SCD.

The Sickle Cell Disease Surveillance, Prevention, and Treatment Act of 2018 (Public Law No: 115-327) was the product of nearly three years of coordinated effort. ASH members and leaders educated Congressional lawmakers (Tim Scott [R-SC], Cory Booker [D-NJ], Danny Davis [D-IL], and Michael Burgess [R-TX]) and their staff on the burden of the disease and potentially curative scientific advances.

Julie Kanter, MD, formerly director of sickle cell research at the Medical University of South Carolina, was particularly influential, speaking directly with Senators about legislation to authorize SCD treatment and surveillance programs. In addition, the Society organized and hosted multiple Congressional briefings and was instrumental in encouraging 60 organizations to sign letters to policymakers in support of SCD legislation.

The newly minted legislation expresses support for SCD research, reauthorizes SCD treatment grants awarded by the Health Resources and Services Administration, and authorizes public health initiatives in SCD – most notably a data collection program within the Centers for Disease Control and Prevention (CDC). Data collection programs are necessary to understand the health outcomes and health-care use patterns of individuals with SCD, including geographic variability.

ASH remains committed to prioritizing patients with SCD. The Society’s Committees on Practice and Government Affairs continue to encourage federal agencies and Congress to fund, enhance, and expand government activities in SCD research, training, and services.


ASH Clinical News Seeks Its Next Editor-in-Chief

ASH is in the initial stage of the selection process for the next editor-in-chief of ASH Clinical News, for a three-year term beginning January 2020. Candidates with an MD, MD/PhD, or equivalent medical degree must have a strong clinical background and be facile with translational science, an eye for medical trends in the hematologic space, an appreciation for an evidence-based approach, a working knowledge of ASH programs and initiatives, and an interest in developing content that would appeal to other medical disciplines, as well as demonstrated writing, reviewing, and editing skills. To apply by the deadline of February 28, 2019, ASH members should submit a vision statement, resume, and cover letter, including a description of editorial experience. Applications can be submitted via email to khubing@hematology.org or mailed to:

ASH Clinical News
c/o Kristin Hubing, Managing Editor

American Society of Hematology
2021 L Street, NW, Suite 900
Washington, DC 20036

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