United to Conquer Sickle Cell Disease

SCDC Update


Celebrate Black History Month 2023

Happy Black History Month! Throughout the month of February, the Sickle Cell Disease Coalition (SCDC) is highlighting the intersection of sickle cell and black history and celebrating African American researchers and advocates. Follow @ConquerSCD on Twitter to learn more. 

ASH PSA Video on Health Equity & SCD Care

The American Society of Hematology (ASH) produced a public service announcement (PSA) video on issues of inequity in health care services provided to individuals living with sickle cell. This video offers an introduction to SCD, issues of systemic inequity faced by people living with SCD, and resources for providers and advocates to fight implicit bias in their work. Learn more here. 

NBCSL Press Release: “The National Black Caucus of State Legislators Urges Policy Changes to Better Treat Sickle Cell Disease”

The National Black Caucus of State Legislators (NBCSL) serves as a national network of elected officials advocating on critical issues affecting African Americans and other marginalized communities. The caucus has prioritized sickle cell disease (SCD) as a top health care initiative and calls on state and federal law makers to improve data collection, quality care, and access to new treatments. Learn more here. 

Sick Cells Resource: Faces of SCD Storytelling Program 

Sick Cells Faces of SCD Storytelling Program shares the lives and legacies of diverse individuals living with SCD and advocating across the United States. Learn more here.

CDC Funding Opportunity (CDC-RFA-DD-0002): Sickle Cell Data Collection Program

The Centers for Disease Control and Prevention (CDC) plans to fund recipients for a five-year period of performance to implement the Sickle Cell Data Collection program. 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 component A recipient. Learn more here. 

Federal News Article on India: “Budget 2023: Health Government to Take Up Fight Against Sickle Cell Anemia”

Federal News published an article titled, “Budget 2023: Health Government to Take Up Fight Against Sickle Cell Anemia.” This article summarizes Finance Minister of India Nirmala Sitharaman’s comments regarding a new effort to eliminate sickle cell anemia in India by 2047 through new investments in sickle cell awareness, screening, genetic counseling, research, and nursing education. Learn more here. 

Sickle Cell Warriors Inc. International Day of Prayer

Sickle Cell Warriors, Inc. will host an International Day of Prayer from February 18 to February 19, 2023. Clergy worldwide will join this event to pray for a global cure and better treatment options for SCD, reduced stigma, and an end to negative treatment of SCD warriors. Learn more here. 

Essence Article: “NY Jets Star Tevin Coleman and Wife Akilah Talk Raising a Child with Sickle Cell Disease, Protecting Her Innocence”

Essence magazine published an article titled, “NY Jets Star Tevin Coleman and Wife Akilah Talk Raising a Child with Sickle Cell Disease, Protecting Her Innocence.” The article discusses the importance of SCD awareness, and the proactive care needed to help people impacted by SCD live life to the fullest. Learn more here. 

Training Opportunity: SCDAA National CHW Training Spring 2023 Cohort

Gain the skills and knowledge needed to become a successful SCD community health worker (CHW) through the Sickle Cell Disease Association of America’s (SCDAA) CHW training program. This virtual program takes place from March 6, 2023 - May 11, 2023, and covers the core competencies of community health workers with an additional concentration on SCD. Learn more here. 

St. Jude Children Research Hospital Resource: “Hydroxyurea for Sickle Cell Disease”

St. Jude Children’s Research Hospital published a resource titled, “Hydroxyurea for Sickle Cell Disease.” This resource provides information on how hydroxyurea works, its efficacy in treating SCD, and frequently asked questions (FAQ) to aid the sickle cell community. Learn more here. 

NMDP Advocacy Opportunity

The National Marrow Donor Program (NMDP) partners with Congress to deliver cures to blood cancer and blood disease patients nationwide through the C.W. Bill Young Cell Transplantation Program, also known as the Nation’s Registry. This month, NMDP advocates will meet with members of Congress to educate and share the importance of the Nation’s Registry for patients in need of life-saving transplant. Learn more here. 

Sickle Cell Disease News Article: “Red Cross Sickle Cell Blood Donation Efforts Win 25k First Energy Grant”

Sickle Cell Disease News recently published an article titled, “Red Cross Sickle Cell Blood Donation Efforts Win $25k First Energy Grant.” This article discusses the American Red Cross (ARC) Sickle Cell Initiative which aims to fight health disparities faced by SCD warriors. The ARC Central Appalachian Region received $25,000 from the First Energy Foundation to support SCD warriors and increase the number of Black people who donate blood. Learn more here. 

JHU Hub Article: “The Thorny History of Sickle Cell Anemia”

Johns Hopkins University (JHU) Hub magazine recently published an article titled, “The Thorny History of Sickle Cell Anemia.” This article discusses the history of SCD research and care at Johns Hopkins University, and highlights the insights of Dr. Lydia Pecker, a pediatric hematologist, and Director of the Young Adult Clinic at the Johns Hopkins Sickle Cell Center for Adults. Learn more here. 

SCDAA MARAC Statement: Penicillin Shortage

On January 23, 2023, the SCDAA Medical and Research Advisory Committee (MARAC) released a statement discussing the penicillin VK solution shortage. Penicillin VK in liquid form is prescribed for babies and young children with SCD who are unable to swallow pills as standard care, twice a day, starting as early as 6-8 weeks of age. Learn more here. 

GSCDN 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. Learn more here. 

**SCD EVENTS**

ELSI Virtual Program: “Access to Genetic Screening and Therapies: Case Study of Sickle Cell Disease (2/ 15/23)

ELSIhub enhances the production and use of scholarship on the use of ethical, legal, and social implications of genetics and genomics by supporting the resource sharing and community building activities of scholars, clinicians, educators, trainees, and the wider community. ELSIhub will hold a virtual program titled, “Access to Genetic Screening and Therapies: Case Study of Sickle Cell Disease” on February 15, 2023, from 4:00pm-5:00pm ET.  Register to attend here.  

THT Howard University Hospital SCD Clinical Care Model Interactive Community Session (2/16/23)

The Hills Tandem (THT), a management consulting company is hosting an interactive session to determine which clinical care model best fits the needs and desires of the SCD warrior community receiving treatment at Howard University Hospital. This interactive community session will take place on Thursday, February 16,2023, at Howard University Hospital in Washington, D.C. Register to attend here. 

Worldwide Sickle Cell Disease Coalition Update (2/21/ 23) 

The fundamental goal of the Worldwide Sickle Cell Disease Coalition (WSC) is to vastly reduce childhood mortality associated with SCD, and to significantly improve the lives of those living with the disease in low- and middle-income countries. The Worldwide Sickle Cell Disease Coalition is hosting a webinar to provide an update on its activities on February 21, 2023, at 8:00am ET.  Learn more here. 

GASCDO Webinar: “Love, Dating, and Marriage with Sickle Cell Disease” (2/25/23)

The Global Alliance of Sickle Cell Disease Organizations (GASCDO) will host a webinar titled, “Love, Dating, and Marriage with Sickle Cell Disease” on Saturday, February 25, 2023, at 10:00am ET. This program will bring together SCD warrior panelists from across the globe to discuss the challenges they faced related to love and dating, and how they overcame them. Register to attend here. 

IASCNAPA Virtual Conference (3/15/23 - 3/16/23)

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) will hold its virtual conference from March 15 to March 16, 2023, with this year’s theme as, “Promoting Health Equity in Sickle Cell Disease.” The virtual program’s keynote speaker is Dr. Ben Danielson, who resigned as the head of the Odessa Brown Children’s Clinic at Seattle Children’s Hospital in protest, citing racism. Register to attend here. 

Sick Cells - SCDAA - Sickle Cell Community Consortium Event: National SCD Policy Forum (3/21/ 23 - 3/22/23)

Sick Cells, SCDAA, and the Sickle Cell Community Consortium are excited to present their first-ever National SCD Policy Forum from March 21 to March 22, 2023. This tri-collaborative event will bring together sickle cell advocates across the United States to raise awareness and educate legislators on funding and policy interventions for SCD. Register to attend here. 

2023 4th Annual 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 to 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. 

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