May-June 2018, Volume 15, Issue 3
Seizing the Moment for Sickle Cell Disease
Published on: May 09, 2018
In recent years, ASH has taken action to address the burden of sickle cell disease (SCD) through a multifaceted initiative in the United States and globally. Some might ask: Why SCD? Why ASH? Why now?
Among hemoglobin disorders, SCD stands out as a condition where our wealth of knowledge has done little to advance patient care. As ASH represents the corpus of modern hematology, it is uniquely positioned to convey the challenges and the potential that require ongoing investments in research and clinical care. This is the first time ASH has undertaken such an effort to support a single disease, and many achievements to date are a testament to a succession of ASH leaders who boldly took on various aspects of this extraordinary task — leaders such as Dr. Jan Abkowitz, who championed the ASH policy on sickle cell trait testing for collegiate athletes that helped frame the public discourse on a controversial issue (www.hematology.org/Advocacy/Statements/2650.aspx); and Dr. Linda Burns who led the establishment of the current ASH research priorities for SCD and sickle cell trait. Tackling these research priorities is a big step toward finding cures in the future (www.hematology.org/Research/Recommendations/Sickle-Cell). Dr. David Williams oversaw a multidisciplinary SCD summit to help identify areas where ASH could have the greatest impact, and formed the basis of the State of Sickle Cell Disease: 2016 Report, while Dr. Charles Abrams presided over the launch of the Sickle Cell Disease Coalition (http://scdcoalition.org), which has become the town square for more than 50 diverse organizations to engage constructively, amplify the voice of the SCD community, and promote joint action. Finally, Dr. Ken Anderson helped crystalize efforts to power a research-driven interactive data repository for all of hematology, starting with multiple myeloma and SCD.
SCD has also been an important component of ASH’s many advocacy efforts, and in late February, the U.S. House of Representatives passed the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act (H.R. 2410). A companion bill was then introduced in the U.S. Senate (S. 2465), sponsored by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) — legislation for which ASH has advocated over the course of many months. ASH will continue to encourage support for the bill and provide updates as it advances through Congress (www.hematology.org/Advocacy/Campaigns/8373.aspx).
Creation of a body of resources to guide clinicians, researchers, and advocates is a critical next step. Our collection of clinicianfocused educational resources includes webinars, the release in 2019 of ASH’s new clinical practice guidelines on the management of acute and chronic complications of SCD, and a forthcoming resource on hydroxyurea for adults with SCD.
We could not realize the overarching mission of ASH without considering how we might make a difference in those parts of the world where the burden of SCD is most profound. ASH is ramping up a global initiative related to SCD that is focused on reducing mortality and promoting newborn screening and early intervention in sub-Saharan African countries. We hope to have made some critical steps in this area by the time of this year’s annual meeting in San Diego.
ASH is deeply committed to helping those who treat SCD patients provide quality care, continue their professional development, and enhance their knowledge and expertise. I hope you will all not only stay abreast of the SCD initiative, but also take action, as so many have, by joining our advocacy, education, and other efforts. We have an extraordinary opportunity to shape the political, medical, and scientific trajectory to improve outcomes for individuals with SCD. This process will require the best minds in the field, support for the most cutting-edge science, and crucial conversations with community leaders and lawmakers.
ASH continues to be a force for collaborative and meaningful change. We should all be proud of what we have accomplished and what we plan to achieve in making a difference in SCD.
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