Whether in our personal or professional lives, anniversaries encourage us to take a moment to acknowledge a commitment and the subsequent journey.
In that spirit, I’d like to use this column to highlight an important anniversary for ASH — one worthy of reflection, celebration, and an enthusiastic pledge to press forward.
In 2015, ASH committed to elevating sickle cell disease (SCD) as a health priority deserving of more global attention and resources — and focus by the Society itself. In the 10 years since, ASH has honored that commitment with a raft of programs and initiatives that offer new hope for individuals affected by SCD and valuable support for clinicians and researchers. ASH’s commitment has been comprehensive, covering workforce development and capacity sharing, data collection and monitoring, research and development, and public education and awareness. In total, ASH has devoted more than $18 million over the past 10 years to its many SCD initiatives. The efforts include:
The SCD Research Network. Part of the ASH Research Collaborative (ASH RC), the SCD Research Network seeks to foster partnerships that accelerate progress in research and improve outcomes for patients. Its work includes collaborating with industry sponsors to design more effective and efficient clinical trials, as well as leveraging the power of real-world evidence through a centralized data repository — the ASH RC Data Hub. To date, the hub has close to 25,000 patient records, representing one-quarter of the SCD population within the U.S.
The Consortium on Newborn Screening in Africa (CONSA). An alliance involving ASH, African-based hematologists, and allied health professionals, CONSA has resulted in the screening of more than 160,000 babies and the introduction of early intervention therapies in sub-Saharan Africa.
The Sickle Cell Disease Coalition. Established by ASH, the coalition is a global alliance of diverse stakeholder organizations that promotes evidence-based interventions and shared decision-making related to SCD care. A virtual annual summit is planned for October 3.
ASH advocacy for SCD. The Society has been unrelenting in pushing for greater federal investment in SCD research and coordinated care of SCD patients. Earlier this year, the SCD Comprehensive Care Act was reintroduced into Congress. While the legislation faces an uphill battle in the current political environment, it remains a top advocacy priority.
Clinical Practice Guidelines on SCD. The guidelines, available on the ASH website, identify best practices for the management of SCD complications to improve the quality of care.
Research awards and career development opportunities. Each year, with more than 20 awards, ASH supports medical students, residents, and hematologists in all subspecialty areas. A focus on SCD is consistently part of that mix. For example, there have been 27 SCD-related projects funded as part of the ASH Scholar Award since it began in 2013 and another 19 SCD projects under the HONORS Award since it began in 2020. Separately, there have been 44 participants focusing on SCD in the Clinical Research Training Institute between 2013 and 2024.
Last year, ASH launched the Center for Sickle Cell Disease Initiatives to streamline its programs for even greater impact, bringing new efficiency and coordination to its ongoing SCD commitment.
Perhaps what is most notable about what I’ve shared here is that this list, while impressive, is not at all comprehensive. There are more ASH programs and initiatives focusing on SCD, and I invite you to visit the online center for details.
This 10-year milestone is particularly worth celebrating for the thousands of hematologists behind it. The dedication and passion of ASH members who are researching SCD treatments and cures, collecting critical data, or caring for their patients make this steadfast commitment to SCD possible, as do the patients who share their stories and advance our learning.
With its emphasis on serving both clinicians and scientists and partnering with other stakeholders to help conquer blood diseases, ASH’s work on the SCD front embodies the very mission of the Society. To all who have been part of this work, thank you.