SCDC Update
“150,000 Black Churches Ask President Biden for Support of the Sickle Cell Disease Comprehensive Care Act”
The National Black Church Initiative (NBCI), a coalition of 150,000 African American and Latino churches which constitute 27.7 million churchgoers and voters, sent President Biden and the congressional leadership a letter seeking their support for the Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S.3389). The Black Church leadership cites this bill as one of its top priorities on its legislative agenda for 2022 and 2023. Learn more here.
The Guardian Article: “New Hope for Sickle Cell Patients as UK Trial of Lab Grown Red Blood Cells Begins”
The Guardian published an article titled, “New Hope for Sickle Cell Patients as UK Trial of Lab Grown Red Blood Cells Begins.” This article notes that laboratory grown red blood cells have been transfused into volunteers in a world first clinical trial that could help revolutionize treatments for individuals living with sickle cell disease (SCD) and thalassemia. Learn more here.
BlackDoctor.org Article: “Sickle Cell Warrior Writes the Children’s Book She Never Had Growing Up”
Blackdoctor.org published an article highlighting the work of award-winning UK author Jenica Leah. As an SCD warrior herself, Jenica Leah decided to write the “My Friend Jen” children’s book series to increase sickle cell awareness and help other pediatric warriors better understand the disease. Learn more here.
SCDC Sickle Cell Reading Lists
To help spread SCD awareness and amplify warriors’ stories, the Sickle Cell Disease Coalition (SCDC) has created SCD reading lists for children, young adults, and adults. These reading lists highlight recommended literature on SCD across an array of genres, including graphic novels, memoirs, historical non-fiction, and more. Learn more here.
Call for Expressions of Interest to Host the 5th Global Congress on Sickle Cell Disease
The Global Sickle Cell Disease Network (GSCDN) invites expressions of interest to host the 5th Global Congress on Sickle Cell Disease. The Congress will take place in 2025 in Africa. Institutions or groups interested in hosting the Congress should submit an expression of interest no later than February 28, 2023, at 12:00pm ET. Please email contact.gscdn@sickkids.ca with questions. Learn more here.
Sick Cells & IVI Paper: “Finding Equity in Value: Racial & Health Implications of U.S. HTA Processes”
Sick Cells and Innovation and Value Initiative (IVI) co-authored a paper titled, “Finding Equity in Value: Racial & Health Equity Implications of U.S. HTA Processes.” This paper discusses the potential implications of flawed or incomplete analyses for health and racial equity in future decision-making and identifies recommendations for improvements in key focus areas to advance racial equity in health technology assessment (HTA). Learn more here.
Sickle Cell Disease News Article: “Endari Approved to Treat Sickle Cell in Adults, Children in Qatar”
Sickle Cell Disease News recently published an article titled, “Endari Approved to Treat Sickle Cell in Adults, Children in Qatar.” The article notes that the Qatar Ministry of Health approved Endari (L-glutamine) to treat adults and children starting at age 5, living with SCD, making Endari access easier for sickle cell warriors in the country. Learn more here.
SCD Therapy Fact Sheets
To help individuals living with SCD explore newly available treatment options, the Sickle Cell Disease Coalition (SCDC) released a series of SCD Therapy Fact Sheets on three newly approved treatments for SCD: Crizanlizumab, L-Glutamine, and Voxelotor. These fact sheets describe how each therapy works, evidence and research surrounding each therapy, and tips on how to discuss therapy options with a health care team. Learn more here.
Sanius Health Celebrates “Top 80 Most Influential Advocates and People in Sickle Cell Disease”
Sanius Health published a list of the “Top 80 Most Influential Advocates and People in Sickle Cell Disease.” Sanius Health hopes to shed light on these issues – as well as the people who are working to address them. Learn more here.
SCAGO Hope Gala Awards: Nominations Open Through 1/30/23
In 2005, the Sickle Cell Awareness Group of Ontario (SCAGO) introduced its Hope Awards to honor the many heroes who have contributed relentlessly to the advancement of SCD. Individuals may nominate candidates for one or more of the award categories, including medical, nursing, allied health, media, volunteering, legislative, humanitarian, and community awards of excellence. The deadline for submission is January 30, 2023. Learn more here.
ASGCT Lunch & Learn Recording: “Navigating the Patient Provider Conversation”
The American Society of Gene & Cell Therapy (ASGCT) held a lunch & learn event titled, “Navigating the Patient-Provider Conversation.” This recording highlights the importance of parents, caregivers, and patients navigating conversations with providers, as well as a provider’s role in educating about the diagnosis. Learn more here.
Medical Marketing and Media Article Highlights Forma & SCDAA’s Believe It PSA Video
Medical Marketing and Media (MM&M) magazine published an article highlighting Forma and the Sickle Cell Disease Association of America’s (SCDAA) “Believe It” public service announcement (PSA). This video aims to spread awareness about the often invisible, yet intense physical impact of SCD. Learn more here.
NFL Players Spotlight Sickle Cell Disease Association of America (SCDAA) through My Cause My Cleats
The NFL’s My Cause My Cleats campaign helps players showcase important causes on their cleats during week 13 NFL games, which are held in early December each year. San Francisco 49ers running back Tevin Coleman and Arizona Cardinals linebacker Markus Golden supported the Sickle Cell Disease Association of America (SCDAA) by wearing custom-designed cleats with inspirational artwork and messages to raise awareness around SCD. Learn more here.
American Journal of Managed Care Article: “Improved Surveillance, Registry Data Could Improve Outcomes in Sickle Cell Disease”
The American Journal of Managed Care (AJMC) published an article discussing the importance of national surveillance programs and longitudinal data collection for SCD. By gathering large sets of longitudinal data, providers and investigators can better evaluate opportunities to improve quality of care and access to services for SCD warriors. Learn more here.
CDC Steps to Better Health for People with SCD Toolkit
The Centers for Disease Control and Prevention (CDC) collaborated with the American Society of Hematology (ASH) and the Sickle Cell Disease Association of America (SCDAA) to develop the Steps to Better Health for People with SCD Toolkit. This collection of tools and resources provides evidence-based guidance on caring for common complications experienced by individuals living with SCD. Learn more here.
PAF Co-Pay Relief Program
The Patient Advocate Foundation (PAF) offers its Co-Pay Relief Program to help reduce the financial distress warriors and their families face when paying for treatment. The foundation believes that no one should go without life-changing medications because they cannot afford them. Learn more here.
**SCD EVENTS**
ASGCT Final Lunch & Learn: Meet the Parents (12/ 22/22)
The American Society of Gene & Cell Therapy (ASGCT) will hold its final virtual lunch & learn event on Thursday, December 22, 2022, from 1:00pm-2:00pm ET. This event will highlight the journeys and experiences of individuals, or parents of individuals, who have received a gene or cell therapy. 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, using 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.
IASCNAPA Sickle Cell Nursing Bootcamp (4/17/23-4/21/ 23)
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) will hold its Sickle Cell Nursing Bootcamp from April 17 to April 21, 2023, at the University of Tennessee Health Science Center, in Memphis, Tennessee. This program offers specialized education and training to nurses who deliver care and develop care policy for people living with SCD, including bedside and clinic nurses, nurse managers and administrators, and nurses in academia focused on SCD. Applicants must be registered nurses actively involved with the SCD patient community. Learn more here.
**SCD & COVID-19 RESOURCES**
Spread the Word
The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org