United to Conquer Sickle Cell Disease

SCDC Update

CONSA Begins Newborn Screening in Kenya 

Newborn screening and early interventions for children born with sickle cell disease (SCD) save thousands of lives each year; however, these practices are limited, particularly in sub-Saharan nations that experience the greatest birthrates with SCD. To address this need, the American Society of Hematology (ASH) established the Consortium on Newborn Screening in Africa (CONSA), an international network that seeks to demonstrate the benefits of newborn screening and early interventions for children with SCD. CONSA works with clinical networks to introduce newborn screening and SCD standards-of-care in seven sub-Saharan African countries: Ghana, Kenya, Liberia, Nigeria, Uganda, Tanzania, and Zambia. Earlier this month, CONSA screened their first babies in Kenya for SCD, marking the official start of newborn screening across all participating CONSA sites. Learn more about CONSA here

New Living Well with Sickle Cell Mobile App

The Children’s Sickle Cell Foundation (CSCF) Living Well with Sickle Cell® is a mobile application intended to help individuals 13 years and older living with SCD better manage their health care.  This powerful tool may be used to support pre-transition and transition programs around the world and is helping adults keep appointments and remember to take their medications. Download the app today on your iPhone and/or Android. Learn more about the app here

Survey on SCD Care During the COVID-19 Pandemic

Patient researchers Drs. David-Zacharie Issom and Sugitha Sureshkumar from the University of Geneva, Switzerland, are conducting a survey titled “Exploring the Status of Non-Communicable Disease Care during the COVID-19 Pandemic.” Drs. Issom and Sureshkumar are gathering data from individuals living with SCD on the management of their chronic illness during the pandemic. Survey participants’ answers will be summarized in a formal report that will be published in a peer-reviewed journal. The survey should not take longer than 20 minutes to complete and all answers will be strictly confidential.  For more information about the survey, contact Dr. Issom David.Issom@unige.ch. Access the survey here

CDC’s Sickle Cell Data Collection Program Announcement  

The Sickle Cell Data Collection program determines the number of people living with SCD and monitors changes related to their health over time.

ACEP Point of Care Tool for SCD Emergency Department Care   

The American College of Emergency Physicians (ACEP), in collaboration with the American Society of Hematology (ASH), recently developed a point-of-care tool to help emergency department physicians provide high-quality, informed care to people living with SCD. Access the interactive tool here

“My Fertility” Video: An Introduction to SCD & Fertility  

Reproductive health and sickle cell are complex. Dr. Kim Smith Whitely, Teonna Woolford, and April Green share their stories and answer questions associated with  SCD treatments, curative options, and reproductive health. The trio discuss the possible risks and benefits associated with transplant compared to treatment options as well as how the disease impacts fertility. Watch the My Fertility video here

Sickle Cell + The Workplace Podcast (Feat. Tayo Rockson)

Hosts Dr. Stephen Boateng and Cass Trimnell talk to workplace diversity and inclusion expert Tayo Rockson, MBA to discuss tips, accommodations, and how to navigate the workplace when living with sickle cell disease. Access the full episode here

Bounded Justice, Biocultural Citizenship, and SCD in Brazil Website Launch 

Public health expert and medical anthropologist Dr. Melissa Creary recently published research on “Biocultural citizenship & embodying exceptionalism: Biopolitics for SCD in Brazil,” which explores how race and culture are tied to the story of SCD in Brazil. To share these findings more broadly, Dr. Creary created a complementary website to feature this research and the stories of Brazilian warriors. Visit the website here

My Special Aflac Duck© Program Expands to SCD  

Aflac is expanding its My Special Aflac Duck© program and philanthropic support for pediatric cancer to the sickle cell community. The My Special Aflac Duck© is designed to reflect the unique needs of living with sickle cell, such as staying warm and hydrated. This interactive toy will be freely available to health care professionals and community-based organizations that support children with blood disorders like SCD. Learn more about the program here

University of Oxford Racism & SCD Workshops  

In the light of the international Black Lives Matter movement, Drs. Noémi Roy and Catriona Gilmour Hamilton hosted a series of workshops at Oxford University Hospitals NHS Foundation Trust to explore and address overt or unconscious racism towards people living with sickle cell. Read more about the workshop here


Tips on Navigating Medicare Open Enrollment for 2022 from the PAF Sickle Cell CareLine  

The open enrollment period for Medicare coverage closes December 7th; changes made during this enrollment period will take effect January 1st of 2022. The Patient Advocate Foundation (PAF) Sickle Cell CareLine can help individuals living with SCD and their caregivers navigate this process by carefully reviewing current Medicare coverage and noting any upcoming changes that may impact access to care needed. Talk to a specialist at the PAF Sickle Cell CareLine to discuss your Medicare coverage and needs for the year ahead. Access the Sickle Cell CareLine here


63rd ASH Annual Meeting & Exposition (12/11-12/14) 

The American Society of Hematology (ASH) is holding its 63rd Annual Meeting & Exposition as a hybrid event with in-person sessions in Atlanta, Georgia, and virtual components for remote attendees. The core meeting dates are December 11 to 14, 2021; however, content will be shared from December 8 to 17, 2021. An outline of sickle cell-related sessions that will be featured throughout the meeting is shared below:

Learn more about the ASH Annual Meeting and register to attend here.


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