New Community Resources Released on Gene Therapy for SCD

Make sure to check out the recently released resources for the community on gene therapy for sickle cell disease (SCD), including a short video and infographic. The resources were jointly developed by the American Society of Gene & Cell Therapy (ASGCT), American Society of Hematology (ASH), the ASH Research Collaborative, and the National Heart, Lung, and Blood Institute (NHLBI) Cure Sickle Cell Initiative. The resources address the cause and burden of SCD as well as explain how gene therapy approaches can target that cause; viral vectors to address concerns; and some risks and benefits.

ASH and SCDAA Hold Virtual Congressional Briefing on Sickle Cell Disease

On October 8, ASH and the Sickle Cell Disease Association of America (SCDAA), in conjunction with Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives Danny K. Davis (D-IL) and Michael C. Burgess, M.D., (R-TX), hosted a virtual congressional briefing on sickle cell disease (SCD). The briefing presented an overview about the current state of SCD during the pandemic and highlighted the recent report, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, released by the National Academies of Sciences, Engineering, and Medicine (NASEM), along with policy strategies as recommended by the report. Presenters included Dr. Biree Andemariam, (Chief Medical Officer, SCDAA); Kyle Smith, MS (Crescent Foundation); Dr. Kim Smith-Whitley (Children’s Hospital of Philadelphia); and Dr. Chancellor Donald (Chair, ASH Committee on Practice). Click here to view a recording of this informational briefing.

HHS Office of the Assistant Secretary for Health Presents Award to Dr. Kwaku Ohene-Frempong

On October 14, the Assistant Secretary for Health, ADM Brett P. Giroir, M.D., presented the Assistant Secretary of Health (ASH) Exceptional Service Medal to Dr. Kwaku Ohene-Frempong recognizing him for his outstanding contributions on behalf of the millions of people worldwide with sickle cell disease (SCD). The civilian medal is awarded for exceptional achievement to the cause of public health and medicine and is the highest civilian award from the Public Health Service, which includes all health divisions of the Department of Health and Human Services (HHS). Dr. Ohene-Frempong is the first civilian recipient of the ASH Exceptional Service Medal. Dr. Ohene-Frempong is Professor Emeritus of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and is an inspirational force for the Global Coalition on Sickle Cell Disease.  His experience as a clinician in Ghana serves a model for how to incorporate management of SCD in primary healthcare, and his mentorship and dedication to the disease have impacted thousands of children in Ghana and around the world. Read more.

Connecting Warriors to Curated Sickle Cell Content

The Sickle Cell Connect Series is now available ON DEMAND! Visit www.sicklecellconnect.com to view a three-part video series: 

• Episode 1: What is sickle cell disease (SCD)?
• Episode 2: Living with SCD
• Episode 3: The future of SCD

The programs feature experts, SCD organizations, warriors, and their families discussing their work to spread awareness of SCD, sharing stories and addressing treatment and transplant options for SCD. This series has been created by Be The Match to build awareness of SCD, empower patients, and grow the Be The Match Registry. Also, make sure to visit the Sickle Cell Connect Resources webpage to learn about other valuable SCD tools and programs, including the Black Blood Heals Podcast.

SCDAA Hosts Successful Virtual Convention

Congratulations to the Sickle Cell Disease Association of America (SCDAA) on a successful 48th Annual National Convention 2020! Despite needing to meet virtually, the Convention provided an invaluable opportunity for the community to network and engage in educational programs. The program also provided the opportunity for attendees to celebrate virtually during the Annual Unity Soiree Gala and Awards Program. Kudos to the following leaders from the SCD community and active members in the SCD Coalition on receiving the following SCDAA’s 2020 prestigious awards at the program:

• Community Health Worker P.O.W.E.R. Award:  Andre Harris, Foundation for Sickle Cell Disease Research
• Champion Award: Cassandra Trimnell, Sickle Cell
• Chairman’s Award: Dr. Biree Andemariam, Chief Medical Officer, SCDAA and University of Connecticut Health

CDC’s Sickle Cell Disease Program Activities

• CDC released the “Steps to Better Health for People with Sickle Cell Disease” toolkit, which includes common complications of sickle cell disease (SCD) and steps to take for better health. The toolkit was created in partnership with the American Society of Hematology (ASH). Fact sheets related to this content will be coming soon!
• CDC is expanding the Sickle Cell Data Collection (SCDC) program by funding nine states to collect essential data on SCD. The project aims to provide information that may be used to improve policy and healthcare standards, inform best practices, and illuminate pathways to deliver innovative treatments and cures in ways that can help address health disparities in SCD.
• SCDC Georgia released the brief, Hospital encounters among adults living with sickle cell disease in Georgia, 2012–2016.
• Dr. Mary Hulihan (CDC) and Dr. Titilope Fasipe (Baylor College of Medicine) appeared as guests on the September 12th episode of Saturday Mornings with Joy Keys.
• CDC’s article, “Sickle Cell Disease and Health Equity: What’s the Nurse’s Role?” was published in the National Black Nurses Association’s August newsletter.
• New publications:
  • Trends in sickle cell disease-related mortality in the United States, 1979 to 2017.
  • Coronavirus disease among persons with sickle cell disease, United States, March 20-May 21, 2020.

Watch A Cultural Conversation: Playing with Sickle Cell 

In late September, the Black Women’s Health Imperative (BWHI) hosted A Cultural Conversation: Playing with Sickle Cell. The recording is available here. This was the first program in the BWHI’s new series of virtual conversations to address social and environmental justice issues in the context of health and diseases impacting Black Americans.

The program featured:

• Jemele Hill, Moderator and Award-Winning Sports Journalist
• Ryan Clark, Former NFL Pro Bowl Safety
• Santonio Holmes, Former NFL Pro Bowl Wide Receiver and Super Bowl Champion
• Devin McCourty, NFL Free Safety for the New England Patriots, 3-time Super Bowl Champion, and Sickle Cell Advocate
• Ty Montgomery, Running Back for the New Orleans Saints
• Dr. Kim Smith-Whitley, Children’s Hospital of Philadelphia
• Linda Goler Blount, MPH, President & CEO, BWHI

HHS Office of Minority Health Announces $1 Million Award to Develop National Sickle Cell Disease Data Collection System

On October 1, the Office of Minority Health (OMH) at the U.S. Department of Health and Human Services (HHS) announced an approximately $1,000,000 grant to the American Society of Hematology (ASH) to develop and implement a national sickle cell disease (SCD) clinical data collection platform. The Sickle Cell Disease Clinical Data Collection Platform initiative will be led by ASH, the ASH Research Collaborative (ASH RC), and the Learning Networks Program at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital. This initiative will leverage and enhance the ASH RC SCD Data Hub Program to serve as a nationwide SCD data collection platform and create a new SCD Learning Community. The platform will leverage longitudinal patient data to help track practice patterns, document and share best practices for improving care, facilitate research, and ultimately work to improve outcomes at a national level. Read more.

***SCD AND COVID-19***

SCD and COVID-19 Resources

The following links are frequently updated with timely information for the community and providers.

• Centers for Disease Control and Prevention’s Information about extra precautions individuals with SCD can take during COVID-19.

• Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion
• American Society of Hematology COVID-19 Resources
  • Checklist for SCD Patients Presenting to the Emergency Department (ED) During Pandemic
  • Frequently Asked Clinical Questions on COVID-19 and SCD
• SCDAA’s Advisory and Resources on SCD and COVID-19 for Community and Providers
  • Health Alert for People with Sickle Cell Disease and their Caregivers
  • Provider Advisory:  An Outline to Decrease Burden and Minimize Morbidity – Guidance for the acute and chronic disease management of individuals with SCD
  • Sub-Saharan African Provider Advisory
• Sickle Cell Community Consortium Offers Resources to Address Challenges of Pandemic
• Be The Match Offers Counseling for Sickle Cell Warriors During Pandemic