SCDC Update
ASH Press Release: “New Pain Medications Are Still Widely Inaccessible to Individuals Living with Sickle Cell Disease”
On March 8, 2023, the American Society of Hematology (ASH) published a press release titled, “New Pain Medications Are Still Widely Inaccessible to Individuals Living with Sickle Cell Disease.” This press release notes that less than 4% of people living with sickle cell disease (SCD) who experience chronic pain episodes have prescriptions for newer FDA-approved drugs, including l-glutamine, voxelotor, and crizanlizumab, according to a new study published in Blood Advances. Learn more here.
SCDC Resource: SCD Therapy Fact Sheets
In 2021, the SCDC published a series of plain-language fact sheets on the three most recently approved therapies for SCD: l-glutamine, voxelotor, and crizanlizumab. These SCD Therapy Fact Sheets aim to inform individuals living with SCD and their caregivers about these therapies, and to help them explore and discuss potential new treatment options with their health care team. Access the SCDC Therapy Fact Sheets here.
Funding Opportunity (CDC-RFA-DD-23-0002): Sickle Cell Data Collection Program
The Centers for Disease Control & Prevention (CDC) plans to fund recipients for a five-year period of performance to implement the Sickle Cell Data Collection program. The Sickle Cell Data Collection program collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. There will be two components to the award - component A (implementation and technical assistance); and component B (capacity building and implementation) - with the expectation of a close, working one-on-one collaboration between each component B recipient and a component A recipient. Learn more here.
Yahoo News Article: “Nemours Children’s Health Receives $78 Million Donation for Cancer, Sickle Cell Treatment”
Yahoo News recently published an article titled, “Nemours Children’s Health Receives $78 Million for Cancer, Sickle Cell Treatment.” This article discusses the $78 million dollar donation from the Lisa Dean Moseley Foundation to fund research and to expand the pediatric hospital system’s capacity to provide clinical care for children with cancer, SCD, and other blood disorders. Learn more here.
Sick Cells Resource: “Health Insurance Basics & Advocating for Appropriate Coverage”
Sick Cells produced a resource titled, “Health Insurance Basics & Advocating for Appropriate Coverage.” This toolkit is designed to help SCD warriors and advocates learn the basics about insurance coverage, options to lower costs, and steps to appeal denials of coverage. Learn more here.
Ghana News Agency Article: “Institute Program to Screen Newborns for Sickle Cell Disease”
Ghana News Agency published an article titled, “Institute Program to Screen Newborns for Sickle Cell Disease.” This article discusses comments by Professor Fiifi Ofori-Acquah, Director of the Ghanaian Genome (GhGenome) project, an initiative of the University of Ghana’s West African Genetic Medicine Centre to improve access to all aspects of genetic health in the country. Professor Ofori-Acquah called on the government to institute a national program where every baby born in the country is screened for SCD. Learn more here.
Education & Training Program: Sickle Cell Disease Advanced Practice Providers Opportunities, Resources, & Training Program (SAPPORT)
The SAPPORT program offers a free, comprehensive, and on-demand curriculum to train advanced practice providers in the treatment of people with SCD. This curriculum was developed by U.S. Heath Resources and Services Administration (HRSA) grantees. Graduates of the SAPPORT program receive certificates from the National Alliance for Sickle Cell Centers (NASCC). For more information regarding the program and how to access the curriculum, please email: SINERGE@jhmi.edu.
GEN Biotechnology Article: “Health Equity in Sickle Cell Research and Access to Therapy”
GEN Biotechnology published an article titled, “Health Equity in Sickle Cell Research and Access to Therapy.” This article explores the promise of cutting-edge gene editing and artificial intelligence (AI) technologies for SCD care, as well as the need for more equity in research, funding, and health care to ensure these new therapies can be accessed. Through this article, the author investigates the current state of these technologies in Asia, Africa, and the U.S. Learn more here.
UIC Today Article: “Marketing Study of Sickle Cell Patients Looks at Effects of Racism on the Adoption of Innovative Therapies”
UIC Today published an article titled, “Marketing Study of Sickle Cell Patients Looks at Effects of Racism on the Adoption of Innovative Therapies.” This article highlights a recent study by University of Illinois Chicago researchers in the College of Business Administration, which analyzed how the experiences of racism and discrimination in health care significantly affect the adoption of innovative medical technology, like gene therapies and gene editing technologies. Learn more here.
SCDC Representative in the News: BlackDoctor.org Article: “Dr. Yvette Miller: Epitome of Black Excellence”
Blackdoctor.org recently published an article titled, “Dr. Yvette Miller: Epitome of Black Excellence.” This article features an interview with Dr. Yvette Miller on her childhood, early career, and her role at the American Red Cross (ARC) where she works to increase blood donations by African Americans and advocate for individuals living with SCD. Dr. Yvette Miller also currently serves as the Co-Chair of the SCDC’s Sickle Cell Trait Task Force. Learn more here.
Be The Match Resource: Sicklecellconnect.com
Sicklecellconnect.com is the hub for all SCD resources offered by Be the Match. Through this website, SCD warriors and their families can access free resources including warrior packages, patient navigation, clinical trial search and support, mental health counseling, and peer connect. Learn more here.
GASCDO Webinar Recordings
The Global Alliance of Sickle Cell Disease Organizations (GASCDO) hosts monthly webinars on hot topics for the SCD community. Check out GASCDO’s Facebook page to watch recent community events hosted on living with sickle cell trait, dating with SCD, and other topics of interest. Learn more here.
**SCD EVENTS**
Tri-Collaborative National SCD Policy Forum (3/21/ 23-3/22/23)
Sick Cells, Sickle Cell Disease Association of America (SCDAA), and the Sickle Cell Community Consortium are excited to present their first-ever National SCD Policy Forum from March 21 - March 22, 2023. This tri-collaborative event will gather sickle cell advocates across the United States to raise awareness and educate legislators on timely funding and policy interventions for SCD. Register to attend here.
Sickle Cell Community Consortium 7th Annual Leadership Summit (3/23/23-3/27/23)
The Sickle Cell Community Consortium will hold its 7th Annual Leadership Summit in Atlanta, Georgia from March 23 - March 27, 2023. This summit is ideal for professionals from various stakeholder groups, such as industry, research, legislative, federal, and healthcare providers, as we tackle issues across the board related to sickle cell. Register to attend here.
2023 4th Annual SCCAPE Conference (3/27/23-3/31/ 23)
The Sickle Cell Care Coordination for Achieving Patient Empowerment (SCCAPE) will hold its 4th Annual Conference from March 27 – March 31, 2023. The first two days will be held virtually, while days three and four will be held in-person at the Larrick Student Center in Richmond, Virginia. Register to attend here.
FSCDR 2nd Annual Nursing Symposium (3/30/23)
The Foundation for Sickle Cell Disease Research (FSCDR) will hold its 2nd Annual Nursing Symposium virtually on March 30, 2023, from 9:00am-4:00pm ET. Attendees will hear from industry professionals, including Scientific Chair Dr. Lori Vick, on how they are addressing nurses and people living with SCD collaborating to empower the beloved community. Register to attend here.
2023 Virtual Hemoglobinopathy Counselor Training Course (4/12/23-4/13/23)
This two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, will take place from April 12 - April 13, 2023, via Zoom web conferencing. The course registration fee is $250. The deadline to register is April 1, 2023. Nursing and social work continuing education credits are available. For more information, please email: Christina.Bennett@cchmc.org. Register to attend here.
ASPHO Conference (5/10/23-5/13/23)
The 2023 American Society of Pediatric Hematology/Oncology (ASPHO) Conference will take place from May 10 – May 13, 2023, in Fort Worth, Texas. This conference offers many sessions related to SCD care for pediatrics and young adults. Learn more here.
ASGCT Annual Meeting (5/16/23-5/20/23)
The American Society of Gene and Cell Therapy (ASGCT) Annual Meeting will take place from May 16 – May 20, 2023, in Los Angeles, California. ASGCT’s Annual Meeting offers professionals in gene and cell therapy a venue to cultivate meaningful discussion, share knowledge, and build relationships between patient advocates, clinicians, and researchers. ASGCT is also offering eligible non-profit employees, caregivers, and sickle cell warriors who engage in patient advocacy free registration to the Annual Meeting. Learn more here.
Save the Date: NHLBI Annual Sickle Cell Disease Meeting (8/14/23-8/16/23)
The National Heart, Lung, and Blood Institute (NHLBI) will hold its Annual Sickle Cell Disease Meeting from August 14 – August 16, 2023. Save the date and stay tuned for more information!
**SCD & COVID-19 RESOURCES**
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