SCDC Update
Celebrate National Sickle Cell Awareness Month 2022 with the SCDC Sickle Cell Awareness 2022 Archive!
To celebrate National Sickle Cell Awareness Month, the Sickle Cell Disease Coalition (SCDC) is sharing the knowledge of its 100+ member organizations through an archive of timely articles, resources, events, and legislative updates and tools developed to spread sickle cell disease (SCD) awareness and celebrate the month. Access the SCDC National Sickle Cell Awareness Month Archive here.
SCD Press Release: “Statements by HHS Secretary Xavier Becerra, Other Department Leaders on National Sickle Cell Awareness Month”
On September 20, 2022, the U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra and other HHS leaders from across the Department released statements to celebrate September as National Sickle Cell Awareness Month. Learn more here.
New SCD Legislation Introduced: Van Hollen, Booker, Lee, Davis, Introduce Bill to Improve Access to Care for Americans with SCD
On September 15, 2022, U.S. Senators Chris Van Hollen (D-MD) and Cory Booker (D-NJ), along with U.S. Representatives Barbara Lee (D-CA-13) and Danny Davis (D-IL-7), introduced the Sickle Cell Disease Treatment Centers Act. This bill aims to strengthen the workforce and network for comprehensive adult SCD care through a National Sickle Cell Disease Treatment Center Grant Program. This program would authorize up to $535 million in grants annually to specialized SCD care centers and community health centers, so they may partner to implement a hub-and-spoke care model and improve the delivery of care to individuals living with SCD. Learn more here.
CMS OMH Video: “Sickle Cell Disease: What You Need to Know”
The Centers for Medicare & Medicaid Services Office of Minority Health (CMS OMH) developed a video to detail common health complications faced by individuals living with SCD and the treatment options available to them. This video is intended to help providers deliver quality care to individuals living with the disease. Learn more here.
KCA & SCDAA Resource: “Know and Tell” SCT Webpage
The Kidney Cancer Association (KCA) and the Sickle Cell Disease Association of America (SCDAA) partnered to create the “Know and Tell” webpage on sickle cell trait (SCT). This resource provides information on SCT, associated risk factors, like renal medullary carcinoma (RMC), and the importance of knowing and communicating your SCT status to health care providers. Learn more here.
NHLBI Sickle Cell Awareness Month Toolkit
The National Heart, Lung and Blood Institute (NHLBI) Blood Diseases and Disorders Education Program is excited to share new resources for National Sickle Cell Awareness Month, including an SCD fact sheet, a drop-in article focused on SCD Treatments, “Today’s Faces of SCD” stories, social media graphics, and more. Learn more here.
Watchdog News Article”Sarafinah Donates Medicine Worthy 45 Million to Mukono General Hospital Sickle Cell Clinic”
Watchdog News recently published an article highlighting new SCDC member organization Sarafinah Sickle Cell Society, a non-government organization in Mukono, Uganda, which donated 45 million Shillings worth of hydroxyurea medicine to Mukono General Hospital. The donation came at a time when the facility’s sickle cell clinic is decrying the limited supply of hydroxyurea and other vital clinic reagents. Learn more here.
Zawaya News Article: “African Health Ministers Launch Drive to Curb SCD Toll”
Zawaya News published an article highlighting a campaign launched by African health ministers on August 23, 2022, which seeks to ramp up awareness and bolster prevention and care to curb the toll of SCD, one of the most common illnesses in the region. Learn more here.
CDC Stories of Sickle Cell Project
The Centers for Disease Control and Prevention (CDC) will be launching an update to its Stories of Sickle Cell project, which shares the unique stories and diverse identities of those living with SCD. Through videos, short stories, and a photoblog, the series aims to provide a deeper understanding of people living with SCD to help destigmatize the disease and inspire action to support the SCD community. Learn more here.
SCDC Repository of Global SCD Educational Tools
The Sickle Cell Disease Coalition (SCDC) created a repository of educational tools to help sickle cell advocates around the world spread SCD awareness. This repository includes topical infographics and modifiable presentation slides that can be adapted for different audiences and needs. Learn more here.
ASH Releases New Policy Statement on a Strong Blood Supply
The American Society of Hematology (ASH) released a new policy statement supporting steps to ensure a safe and adequate blood supply and to further encourage donations from all healthy people capable of donating. The statement emphasizes the need for all stakeholders to explore potential evidence-based solutions that ensure patient safety. Learn more here.
GHPC Resource: BloodDonorDiversity.com
The Georgia Health Policy Center at Georgia has released its updated website, BloodDonorDiversity.com, to help diversify the blood supply for individuals with Sickle Cell Disease (SCD) and Thalassemia. This website features a dynamic toolkit to raise awareness on the need for blood donations particularly from those with African, Mediterranean, Middle Eastern and Asian ancestry, offering a close blood match for individuals with SCD and Thalassemia. Learn more here.
PAF Resource: Sickle Cell Care Line
The Patient Advocacy Foundation (PAF) website offers a Sickle Cell Care Line resource, which provides free and confidential assistance to SCD warriors and their caregivers with navigating financial and practical challenges that impact their ability to access healthcare. Learn more here.
NAM Resource: Chronic Pain Map Journey
The National Academy of Medicine (NAM) recently released an interactive Chronic Pain Journey Map. This resource aims to describe the diverse experiences of persons living with chronic, non-cancer-related, pain and identifies five key stages of the journey that have critical touchpoints with the health system. The journey map identifies actions that various stakeholders can take to improve the pain management process. Learn more here.
Sick Cells Roadmap for SCD Caregivers
Sick Cells, in partnership with the Caregiver Action Network (CAN), developed a “Roadmap of Resources” to help sickle cell caregivers improve their quality of life and manage stress. These resources were compiled to help address the common challenges and barriers caregivers face. Learn more here.
**SCD EVENTS**
NIH & ARC: 41st Annual Immunohematology & Blood Transfusion Symposium (9/22/22)
The 41st Annual Immunohematology & Blood Transfusion Symposium will be co-hosted by the National Institutes of Health (NIH) and the American Red Cross (ARC) on Thursday, September 22, 2022. This symposium will be held virtually. Once registered, participants will receive a confirmatory email prior to the meeting with WebEx sign-in information and participant handouts. Register to attend here.
FSCDR: Applications of Machine Learning in Sickle Cell Disease Symposium (9/22/22)
The Foundation for Sickle Cell Disease Research (FSCDR) will hold its Applications of Machine Learning in SCD Symposium virtually on September 22, 2022, from 10:00am – 4:00pm ET. Attendees will explore and learn about the future of artificial intelligence and technology in healthcare and may earn up to 5.5 CME credits for their participation. Sickle cell warriors and their caretakers are invited to participate in the symposium at no cost. Register to attend here.
Sickle Cell Family Reunion & Dream Big Family Fest & Walk (9/24/22)
The Sickle Cell Program at Children’s Mercy Hospital (CMH) will celebrate Sickle Cell Awareness month by hosting a Sickle Cell Family reunion at the Dream Big Family Fest & Walk on September 24, 2022. Families and the community will be able join hospital-wide activities, which include outdoor activities for kids, a 1-mile fundraiser walk, and a shaded outdoor space for gathering and networking. SCD education will be provided through family friendly games, prizes, and giveaways. Register to attend here.
SCAGO Webinar: “Cognitive Challenges in Black People and Children/Youth with Sickle Cell Disease (9/24/22)
As a part of the Sickle Cell Awareness Group of Ontario’s (SCAGO) Sickle Cell Awareness Month events, SCAGO will host a webinar on mental health and SCD on September 24, 2022. During this webinar, Dr. Ayorinde Oyedeji and Dr. Laura Janzen will discuss the impact of SCD and racial trauma on the cognitive functioning in children and youth living with SCD. Register to attend here.
FWGBD 2022 Conference (9/24/22-9/25/22)
The Foundation for Women & Girls with Blood Disorders (FWGBD) will hold its 2022 Conference from September 24 to September 25, 2022, at the Hyatt Regency Crystal City in Arlington, Virginia. Attendees will have ample opportunity to create meaningful connections through dedicated breaks, lunches, workshops, and receptions. The goal is to increase awareness, enhance knowledge, foster the next generation of healthcare providers, and support collaboration across disciplines. Register to attend here.
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