SCDC Update
CDC Releases New Sickle Cell Vital Signs Report
Last month, the Centers for Disease Control & Prevention (CDC) released its latest Vital Signs report on sickle cell disease (SCD). This report focuses on caring for children with sickle cell and emphasizes the need for improved screening and treatment options to prevent life-threatening complications. Learn more here.
ASH SCD Centers Workshop Accepting Applications Until 10.31.22
The American Society of Hematology (ASH) is hosting its 4th SCD Centers Workshop in May of 2023 to train health care professionals to establish a comprehensive care center for adults living with SCD. The workshop will walk participants through the common components of such centers, like the process of developing a business plan, advocating to stakeholders, fostering and measuring quality improvement, and more. Learn more here.
NHGRI’s Democratizing Education for SCD Gene Therapy Project
The National Human Genome Research Institute (NHGRI) released materials from its Democratizing Education for SCD Gene Therapy project. This project convened over 50 stakeholders for a four-day workshop to discuss educational resources and needs surrounding several facets of gene therapy participation to treat SCD. Learn more here.
NEJM Documentary: Sickle Cell Disease & Gene Therapy - Patient and Physician Perspectives
The New England Journal of Medicine (NEJM) produced a brief documentary titled: Sickle Cell Disease and Gene Therapy – Patient and Physician Perspectives. In the video, patients and physicians partner to both highlight the experience of living with SCD and discuss the pathophysiology of the disease and new treatment strategies, such as gene therapy. Learn more here.
Sick Cells HOPE Project
With the growing diversity of individuals living with SCD, Sick Cells identified the need to conduct further research into the unique educational needs for the Hispanic community living with SCD. The goal of the Hispanic Outreach to Promote Equity (HOPE) Project is to understand how race and ethnicity have impacted the experiences of Hispanic individuals with SCD. Learn more here.
Forma & SCDAA’s Believe It PSA Video
Forma Therapeutics and the Sickle Cell Disease Association of America (SCDAA) partnered to create a powerful public service announcement (PSA) that spreads awareness about the impact of sickle cell on daily life. Learn more here.
Essence Magazine Article: Sisterhood & Sickle Cell: The Enduring Sacred Healing Space Black Girlhood Friendship
Essence Magazine recently published an article titled: Sisterhood and Sickle Cell: The Enduring Sacred Healing Space of Black Girlhood Friendships. This article raises awareness of SCD and shares how a friendship spanning more than 20 years has continued, despite the passing of one of the women due to SCD complications. Learn more here.
NIH Global Health Matters Newsletter Article: Profile: Former Fogarty Fellow Siana Nyka Tackles Sickle Cell Disease in Tanzania
The Fogarty International Center at the U.S. National Institutes of Health (NIH) is dedicated to advancing the NIH’s mission by supporting global health research and building partnerships between health research institutions and investigators in the U.S. and abroad. This article highlights former Fogarty Fellow, Dr. Siana Nkya, who chose to research the genetic factors that influence fetal hemoglobin levels in Tanzanians living with SCD. Learn more here.
Cogent Social Sciences Article: Ecological Approach to Sickle Cell Disease & Environmental Quality Assessment in Guadeloupe
The scholarly journal, Cogent Social Sciences recently published an article titled: Ecological Approach to Sickle Cell Disease and Environmental Quality Assessment in Guadeloupe. The article highlights a study on the psychosocial impacts of SCD on young warriors in Guadeloupe. Learn more here.
Giving = Living Campaign
Blood and plasma are needed on an ongoing basis to treat a variety of life-threatening conditions including sickle cell disease (SCD). The Office of Infectious Disease and HIV/AIDS Policy (OIDP), part of the Office of the Assistant Secretary for Health (OASH), created the Giving = Living Campaign to increase awareness of the importance of donating blood and plasma and to encourage Americans to donate regularly. Learn more here.
Avalere Health & Sick Cells Resource: Medicaid Access & Landscape Review for Prescription Drugs Treating Sickle Cell Disease
To assess the barriers associated with accessing treatments for SCD through Medicaid, Sick Cells and Avalere Health analyzed the Medicaid coverage and access landscape for individuals living with sickle cell. The groups conducted an environmental scan to examine Medicaid coverage criteria for five SCD treatments, and surveyed individuals from state Medicaid programs and Medicaid managed care organizations (MCOs) to learn about their recent drug management experience. Learn morehere.
**SCD EVENTS**
3rd Sickle Cell and Thalassemia Conference (10/20/22-10/22/22)
The Annual Scientific Conference on Sickle Cell and Thalassemia (ASCAT) is partnering with the European Hematology Association (EHA) and British Society of Hematology (BSH) to host their 3rd Sickle Cell and Thalassemia Conference in London, United Kingdom (U.K.) from October 20 – October 22, 2022. This conference aims to provide an opportunity for SCD experts to interact with peers on the latest advances in clinical care, transition services, and emerging new therapies. Register to attend here.
SCAGO Peer Support Group Meeting (10/22/22)
The Sickle Cell Awareness Group of Ontario (SCAGO) peer support group is hosting an online session on October 22, 2022, for sickle cell warriors and their families. SCAGO invites attendees to drop in, ask questions, or just listen. Attendees will have the chance to win one of two $50 VISA gift cards. Register to attend here.
SCAGO Annual Sickle Cell Summit (11 /4/22-11/5/22)
The Sickle Cell Awareness Group of Ontario (SCAGO) will virtually hold its Annual Sickle Cell Summit from November 4 - November 5, 2022. This two-day CME-accredited summit is hosted in collaboration with SickKids Hospital, London Health Sciences Centre, McMaster Medical Centre, and the University Health Network. The Summit will support clinicians, patients, their families, policymakers, and those in SCD community advocacy. Register to attend here.
AABB 2022 Annual Meeting (11/6/22-11/7/22)
The Association for the Advancement of Blood & Biotherapies (AABB) 2022 Annual Meeting in Orlando Florida has been cancelled considering Hurricane Ian. AABB is expanding the planned virtual meeting and rescheduling for November 6 - November 7, 2022. AABB will be sending out information to all attendees who had registered for the in-person Annual Meeting in Orlando to transfer their registration to the virtual meeting; this transfer will include a partial refund to reflect the difference in price. Learn more 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 on April 12 - April 13, 2023, using Zoom web conferencing to host virtual sessions. 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.
**SCD & COVID-19 RESOURCES**
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