ASH has many strengths, but one of its greatest abilities is its power to convene. Last month, as part of its broader global initiative, ASH used its convening power to spearhead the ASH Sickle Cell Disease (SCD) Summit: A Call to Action. This summit, chaired by ASH President-Elect Charles Abrams, was the first meeting of its kind for our Society and brought together for a full-day discussion of more than 60 experts in SCD, including clinicians and researchers, federal agency partners, representatives from industry, and other members of the SCD community, to identify the areas of opportunity and highest priorities to ultimately improve outcomes for individuals with SCD.
The issues facing SCD patients both domestically and globally are multiple. ASH realizes that it cannot effectively deal with the enormity of these issues alone. However, the Society is well positioned to facilitate, and in some cases lead, collaborative efforts to impact the lives of individuals with SCD in a positive fashion. ASH has already taken a number of incremental steps to ensure that patients with SCD receive state-of-the-art care, including releasing the ASH Priorities for Sickle Cell Disease and Sickle Cell Trait, co-hosting a briefing on Capitol Hill on SCD, and developing ASH’s clinical quick-reference guides based on the National Heart, Lung, and Blood Institute’s Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014. But there is still so much more we can do.
The summit set the stage for developing forward-looking initiatives. During the meeting, attendees participated in interactive discussions in which they identified progressive and provocative strategies that address all aspects of SCD, including basic, translational, and clinical research, as well as access to care issues, both in North America and around the world. The discussions identified key partners, including government agencies, patient advocacy organizations, other medical/scientific societies, foundations, and industry; the summit also identified issues ranging from the effect of reimbursement on physician specialization in SCD care, to models of community-based care, to education an training of care providers, to existing gaps in research such as in pain treatment and curative therapies.
A commonly held view of those at the summit was that ASH was to be commended for stepping forward to initiate this conversation and was in a unique position to have a positive impact due to the worldwide respect the organization commands in the areas of hematology research, advocacy, and education. Throughout the next few months, ASH will refine and prioritize the issues pinpointed during this summit and identify other stakeholders who should be involved to help advance future efforts. In the short term, the Society plans to launch a dedicated SCD page on the ASH website that will include a list of the Society’s SCD tools and resources, as well as links to federal and other philanthropic programs and funding opportunities for SCD. In the future, this webpage will also include the Society’s official call to action on SCD.
Now is the time for a comprehensive response. We look forward to working with ASH members and partners as we move forward with this critical initiative.