United to Conquer Sickle Cell Disease

SCDC Update, October 2019

NEW SCD Coalition Video Higlights Impact of Group

Thank you to everyone who contributed to last month’s SCDC Update and helped raise awareness for sickle cell disease! The Sickle Cell Disease Coalition’s aim is to amplify the voice of the sickle cell disease (SCD) stakeholder community, so we are pleased to have shared SCD news from not just SCDC members, but the broader SCD community. In honor of the three-year anniversary of the formation of the SCDC, and Sickle Cell Awareness Month, last month we released a video about the Coalition. Please take a look, and feel free to share with anyone who may be interested in learning more about the Coalition.

Seeking Sickle Cell Abstracts for Annals of Emergency Medicine Supplement

The Office of Minority Health of the U.S. Department of Health and Human Services (HHS) is sponsoring a sickle cell disease (SCD) supplement in Annals of Emergency Medicine to raise awareness and improve the knowledge of emergency clinicians regarding challenges of patients with SCD, current best practices, and potential future treatment modalities.  Clinicians, researchers, social scientists, individuals living with SCD, and other SCD stakeholders are invited to submit an abstract by Thursday, October 31, 2019. Get submission details. Abstracts are due October 31. 

CDC Awards Funds to Expand Sickle Cell Disease Data Collection Efforts 

On September 25, the Centers for Disease Control and Prevention (CDC) announced nearly $1.2 million in new funding to help states develop systems to collect data on the issues faced by people living with SCD. Currently, only California and Georgia work with the CDC on the SCD Data Collection Program; however, with new funding, the SCD Program will be expanded to operate in a total of nine states over the next year. The CDC Award is only “bridge” funding and in order to fully expand the program to all 50 states Congress must pass dedicated funding. While the FY 2020 appropriations process continues, visit the ASH Advocacy Center to urge your elected officials to provide funding for the SCD Data Collection Program.

NICHQ Launches Transitions Initiative 

The National Institute for Children’s Health Quality (NICHQ) has launched a national initiative to improve sickle cell disease (SCD) outcomes for those transitioning from pediatric to adult care. Advancements in care have helped more children with rare diseases like SCD reach adulthood, but health systems and providers have struggled to help children transition to adult care, resulting in high rates of complications and mortality for young adults. Too few adult providers coupled with limited resources for helping children and families manage their transition (e.g., connecting to a provider, understanding changes in health insurance, making appointments), mean that far too many young adults fall through the cracks. This can be especially problematic for those living in underserved communities who already face significant challenges in access to care and resources. NICHQ’s initiative has identified strategies to improve care during transition which can ultimately have life-saving and life-changing benefits. Learn more here

House and Senate Introduce Sickle Cell Resolutions 

Last month, Congresswoman Barbara Lee (D-CA-13) reintroduced her bipartisan resolution calling for increased efforts for Sickle Cell Trait research and a national campaign to raise awareness about Sickle Cell Trait, stating,  “More than three million Americans, including one in twelve African Americans and one in a hundred Latinos, carry the sickle cell trait which can lead to sickle cell disease. We must do more to ensure that there is education, awareness, and dedicated resources to combatting this disease.” Additionally, U.S. Senator Tim Scott (R-SC) introduced a bipartisan resolution designating September as Sickle Cell Disease Awareness Month to educate communities across the United States about sickle cell disease and the need to help those living it have a better quality of life and work towards finding a cure. His efforts are joined by Senators Cory Booker (D-NJ), Marco Rubio (R-FL), Elizabeth Warren (D-MA), Mike Braun (R-IN), Sherrod Brown (D-OH), Johnny Isakson (R-GA), Chris Coons (D-DE), Cindy Hyde-Smith (R-MS), Doug Jones (D-AL), Todd Young (R-IN), and James Lankford (R-OK).

ASH Receives ASAE Power of A Award 

Earlier this month, the American Society of Hematology (ASH) was presented with the Power of A Summit Awardfor the Society’s Sickle Cell Disease Multifaceted Initiative during the American Society of Association Executives 2019 Power of A Summit Award Dinner. This award is ASAE’s highest honor for associations that go above and beyond their everyday mission to undertake initiatives that benefit America and the world. ASH’s SCD Initiative was honored for convening world-renowned experts and volunteers dedicated to addressing the burden of SCD in the U.S. and globally. The program, established in 2015 focuses on broad-based education of clinicians and scientists to support collaboration on diagnostics, therapies, and cures. ASH President Roy Silverstein, MD, past ASH President Alexis Thompson, MD, and staff were in attendance to receive the award. 

ICER to Review SCD Therapies - Update 

On August 9, the Institute for Clinical and Economic Review (ICER) announced that it planned to assess the comparative clinical effectiveness and value of crizanlizumab and voxelotor, two not-yet-approved therapies for the treatment of sickle cell disease. The assessment will continue through March 2020, with the final report slated for April 2020. ICER has released a revised Scoping Document, which now also includes an assessment of L-Glutamine (Endari). Please click herefor a detailed timeline from ICER and more information about this review. 

8th Annual SCD Therapeutics Conference

The September SCD Therapeutics Conference, hosted by Global Blood Therapeutics (GBT), and Sickle Cell Disease Association of America (members of the Sickle Cel Disease Coalition), highlighted the latest medical advances and future trends in the treatment of patients with SCD. The conference featured U.S. Representative Robin Kelly (D-IL-2), Chair of the Congressional Black Caucus Health Braintrust, as keynote speaker, and included panel discussions and presentations from leading physicians, SCD advocates, and healthcare policymakers on a range of issues and topics. The conference highlighted the impact of SCD on the brain and cognitive function, and topics in SCD from the perspective of individuals living with the disease. If you missed the conference, the recordings of several sessions are available on GBT’s YouTube channel

GBT’s 2019 Access to Care Summit

On September 11, Global Blood Therapeutics hosted its second Access to Care Summit (ATCS), which focused on gaining a deeper understanding of the evolving stakeholder map related to sickle cell disease (SCD) care for providers, insurers, advocates, and policy makers. The focus was idea and solution generation to help the SCD community adapt to the evolving Access-To-Care Landscape on three main topics: (1)  Addressing the Deficit in Provider Care; (2) Navigating the Emerging Complexity of Treatment Coverage; and (3) Power of Effective Advocacy: Advancing Policy.  The 2019 ATCS presentations are available here and the keynote address presentation is available here.

Sickle Cell Community Embracing Change Together: SCDAA Recap

The SCDAA National Convention took place October 10-12 in Baltimore, MD. This year’s theme was Sickle Cell Community Embracing Change Together.  The convention brought together researchers, physicians, nurses, social workers, health care professionals, individuals living with sickle cell disease (SCD) and sickle cell trait and their families, who participated in innovative symposia, training seminars, interactive panel discussions, and special events all aimed at educating and motivating the entire community to get involved in the fight against SCD. Many Sickle Cell Disease Coalition Members were in attendance, including: American Society of Hematology, Sickle Cell Community Consortium, Sickle Cell Disease Association of Canada, Sickle Cell UK, and more.  

Upcoming SCD Events 


61st ASH Annual Meeting

The 61st American Society of Hematology (ASH) Annual Meeting & Exposition, is scheduled for December 7-10, 2019, in Orlando, FL. The meeting provides an invaluable educational experience and an opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology, including sickle cell disease (SCD). Stay tuned for next month’s SCDC Update which will feature a comprehensive list of SCD programming at the meeting. 

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