SCDC Update
New Inaugural ABC Blood Advocacy Week
On April 5, 2023, America’s Blood Centers (ABC) formally announced its inaugural Blood Advocacy Week, which will take place from April 24 - April 28, 2023. Through Blood Advocacy Week, ABC aims to spread awareness and advance policies that promote the value of blood to patients, communities, and the U.S. healthcare system. Check out the official website BloodAdvocacy.org to learn more about the week’s themed days, advocacy information, and shareable social media content related to the week. Learn more here.
Fierce Pharma Article: “Sickle Cell Disease Gene Therapies from Vertex, Bluebird Can Be Cost-Effective at $1.9M: ICER”
Fierce Pharma recently published an article titled, “Sickle Cell Disease Gene Therapies from Vertex, Bluebird Can Be Cost-Effective at $1.9M: ICER.” This article discusses the advancement of CRISPR-based gene-editing therapies in development for sickle cell disease (SCD) and how an influential drug cost watchdog has an early idea of how these treatments should be priced to be considered cost-effective. Learn more here.
2023 National SCD Policy Forum Recording
Last month, Sick Cells, the Sickle Cell Disease Association of America (SCDAA), and the Sickle Cell Community Consortium hosted their National SCD Policy Forum. This event brought together advocates from across the country to raise awareness and educate legislators on SCD. Access the Day 1 Recording 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 SCD to study long-term trends in diagnosis, treatment, and healthcare access for people living 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.
GANSID Press Release: “The Global Action Network of Sickle Cell & Other Inherited Blood Disorders (GANSID) Launches”
On April 6, 2023, the Global Action Network of Sickle Cell & Other Inherited Blood Disorders (GANSID) published a press release sharing its official launch. This new international organization aims to foster cross-disease collaborations to advance advocacy efforts that improve outcomes for people living with sickle cell and other inherited blood disorders, no matter where they live. Learn more here.
Sickle Cell Disease News Article: “Program Will Detect SCD-related Variants in Black, African Americans”
Sickle Cell Disease News published an article titled, “Program Will Detect SCD-Related Variants in Black, African Americans.” This article discusses the new Sickle Cell Carrier Status Awareness program, which was recently launched to identify and support people who carry genetic variants associated with SCD. This program is a collaboration between the Sickle Cell Foundation of Georgia (SCFG), the Morehouse School of Medicine, and the human genetic testing company 23andMe. Learn more here.
Essence Magazine Article: “Fantasia Shares the Importance of Black People Donating Blood”
Essence Magazine published an article titled, “Fantasia Shares the Importance of Black People Donating Blood.” In this article, singer Fantasia encourages her fans and community to donate blood to the American Red Cross (ARC) to help support individuals living with SCD. Learn more here
ADRP Resource: “U.S. Blood Donation Statistics & Public Messaging Guide”
ADRP, an International Division of America’s Blood Centers released its U.S. Blood Donation Statistics & Public Messaging Guide. This resource was designed for blood centers, media, and individuals interested in the current state of blood donations and utilization, and conveys data curated from published research, credible public sources, and input from industry experts. Learn more here.
ASH PSA Video on Health Equity & SCD
In 2021, the American Society of Hematology (ASH) released a public service announcement (PSA) video on health disparities and issues of inequity experienced by individuals living with sickle cell. This video offers an introduction to SCD, systemic issues faced by people living with SCD, and guidance for providers and advocates to fight for more equitable sickle cell care in their work. Learn more here.
Be the Match Featured Trials Program Accepting Applications for Review
Be the Match’s Featured Trials Program is currently accepting applications through May 15, 2023. This program aims to help patients with blood cancers or blood disorders and their families learn about the impactful clinical trials available to them. Learn more here.
Sickle Cell Foundation of Nigeria Resource: “Sickle Cell Prenatal Diagnosis: What You Need to Know”
The Sickle Cell Foundation of Nigeria provides a resource titled, “Sickle Cell Prenatal Diagnosis: What You Need to Know.” This resource discusses prenatal diagnosis (PND) for SCD, the different PND tests available, and what individuals living with SCD should expect during the PND process. Learn more here.
CDC Resource: “Athletes Don’t Get Sidelined by Sickle Cell Trait! Play it Safe with These Helpful Tips”
In partnership with the American Society of Hematology (ASH) and the Sickle Cell Disease Association of America (SCDAA), the Centers for Disease Control and Prevention (CDC) developed a resource titled, “Athletes Don’t Get Sidelined by Sickle Cell Trait! Play it Safe with These Helpful Tips.” This resource provides answers to frequently asked questions about sickle cell trait (SCT) and tips on how to stay safe and healthy while engaging in physical activity. Learn more here.
Ghana Web TV Interview: “The Lowdown: Living with Sickle Cell Disease in Ghana”
Ghana Web TV posted a video titled, “The Lowdown: Living with Sickle Cell Disease in Ghana.” In this video, SCD warriors Dr. Enam Sefakor Bankas and Nana Esi Duker – McMartney discuss their lived experiences with SCD, common myths surrounding sickle cell, and interventions that can be implemented to improve the lives of affected persons. Learn more here.
**UPCOMING SCD EVENTS**
GASCDO Webinar: “Priapism and Men’s Reproductive Health” (4/22/23)
The Global Alliance of Sickle Cell Disease Organizations (GASCDO) will host a webinar titled, “Priapism and Men’s Reproductive Health” on April 22, 2023, at 10:00am ET. This program will highlight priapism and its effects on reproductive health and quality life for men with SCD.. Register to attend here.
Oncofertility Consortium Webinar: “Fertility Preservation in Patients with Sickle Cell Disease” (5/2/23)
The Michigan State University Oncofertility Consortium will hold a webinar titled, “Fertility Preservation in Patients with Sickle Cell Disease” on May 2, 2023, at 2:30pm ET. This program will feature Drs. Rebecca Flyckt, Mindy Christianson, and Lydia Pecker. Join the Zoom meeting using the passcode 219754.
2023 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. Register to attend here.
SCDAA P.O.W.E.R. ECHO CHW Training Event: “Evolving as a CHW to Leadership” (5/ 11/ 23)
The Sickle Cell Disease Association of America (SCDAA) is hosting a virtual P.O.W.E.R. ECHO training presented by Racquel Kornegay of Piedmont Health Services on the pathway to CHW leadership. This virtual training is free and will take place May 11, 2023, at 12:00pm ET. Register to attend here.
NHLBI Workshop: “Reproductive Health in Women and Girls with SCD: Gaps to Solutions” (5/11/ 23 - 5/12/23)
The National Heart, Blood, and Lung Institute (NHLBI) will hold a workshop titled, “Reproductive Health in Women and Girls with SCD: Gaps to Solutions,” from May 11-May 12, 2023. This workshop assumes a lifespan approach to reproductive health in people with ovaries and SCD and engages questions related to pathophysiology, clinical care, and more. Register to attend 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. Register to attend here.
Save the Date: NHLBI Annual Sickle Cell Disease Meeting (8/14/23-8/16/23)
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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