United to Conquer Sickle Cell Disease

SCDC Update


Celebrating National Caregivers Month with the Sickle Cell Community

November is National Caregivers Month in the United States. To celebrate, the Sickle Cell Disease Coalition (SCDC) is highlighting new and existing resources made specifically for caregivers of sickle cell warriors. Check these resources below:

  • Caregiver Action Network (CAN) & Sick Cells Caregiver Resources & Help Desk: A collection of resources and health care navigation support for caregivers of sickle cell warriors. Learn more here.
  • Center for Disease Control and Prevention (CDC) Resource for Caregivers: Complete Care Plan Form: This resource helps caregivers create a care plan for their loved one. Learn more here.
  • American Academy of Pediatrics (AAP) Webpage: “Sickle Cell Disease (SCD): Information for Parents:” The AAP recently updated its “SCD: Information for Parents” webpage, which shares general information about inheriting sickle cell trait and disease, as well as treatment options currently available and in development. Learn more here.
  • American Society of Hematology (ASH)-CDC-Sickle Cell Disease Association of America (SCDAA) “Steps to Better Health for People with SCD Toolkit:” This toolkit offers a variety of resources sharing evidence-based guidance to help people living with SCD and their caregivers optimally manage sickle cell-related complications. Learn more here.

Blood Advances Article: “The Consortium on Newborn Screening in Africa for Sickle Cell Disease: Study Rationale and Methodology”

Blood Advances recently published a study on the rationale and methodology behind the ASH Consortium on Newborn Screening in Africa (CONSA). CONSA engages research sites across seven sub-Saharan African countries to pilot and study newborn SCD screening and early clinical intervention programs. Learn more here.

Devex News Article: “Can PEPFAR Expand Access to Sickle Cell Disease Treatment in Africa?”

Devex News recently published an article titled, “Can PEPFAR Expand Access to Sickle Cell Disease Treatment in Africa?” The article shares that in the U.S., comprehensive SCD care has managed to reduce childhood mortality by 70%, while deaths in Africa increased by 26% between 2000-2019. Researchers note that leveraging a program like the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) could help increase access to SCD care in low-resource settings. Learn more here.

BTSSCC Partners with 23andMe to Promote Sickle Cell Trait Testing

Breaking the SSickle Cell Cycle Foundation (BTSSCC) partnered with 23andMe to create a Sickle Cell Carrier Status Awareness Program. This program offers participants free 23andMe Health + Ancestry testing kits and provides education and counseling services for those interested through BTSSCC. Program participants may consent to participate in 23andMe’s Research program as well, but this is not required for the program. Learn more here.

New AAP Resource: “Sickle Cell Trait: Parent FAQs”

AAP recently published a new article online titled, “Sickle Cell Trait: Parent FAQs.” This resource provides general information on how sickle cell trait and SCD are inherited, rare health issues related to SCT, athletic participation when living with SCT, and more. Learn more here.

ASH Pocket Guides on SCD

ASH has developed a series of brief, evidence-based pocket guides to help physicians provide quality care to individuals living with rare hematologic diseases, like sickle cell. The SCD pocket guides cover topics such as management of acute complications, hydroxyurea and transfusion therapies, and more. Learn more here.

Registered Nurses: Sign-Up for IASCNAPA’s SCD Nursing Bootcamp

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) will hold its Sickle Cell Nursing Bootcamp from April 17 - April 21, 2023, at the University of Tennessee Health Science Center (UTHSC) in Memphis, Tennessee. This program offers specialized education and training to nurses who deliver care and develop care policy for people living with SCD. Applicants must be registered nurses actively involved with the SCD patient community. Learn more here.

Health Care Workers: Sign-Up for Hemoglobinopathy Genetic Counseling Workshop

This two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, will take place virtually on April 12 - 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.

NMDP Sickle Cell Warrior Program

The National Marrow Donor Program (NMDP) Sickle Cell Warrior Program aims to increase access to treatment through patient education, navigation, financial assistance, peer connections, and research. A dedicated website, SickleCellConnect.com, serves as a resource hub for patients that includes warrior stories, education from providers, information on counseling, a clinical trial search tool, and free Warrior Packages with valuable resources and tools. Learn more here.

Social Science & Medicine Article: “Lived Experience with Sickle Cell Disease: Predictors of Altruistic Participation in Clinical Research”

The scholarly journal Social Science & Medicine recentlypublished an article by Marilyn Baffoe-Bonnie discussing the predictors of altruistic participation in clinical research for SCD. This study examines what aspects of life with SCD are reportedly associated with altruistic motivations for participating in clinical research as an adult. Learn more here.

Cheat Codes Podcast Episode: “Legends of Sickle Cell: The Momma Bears”

On this episode of the Cheat Codes podcast, hosts Dr. Zaidi and Dr. Callaghan talk to several passionate and leading advocates in the sickle cell community referred to as “The Momma Bears”: Yvonne Carroll, Adrienne Shapiro, and Pat Corley. Later in the episode listeners also hear from Teonna Woolford, CEO of the Sickle Cell Reproductive Health Education Directive (SCRED). Learn more here.

Washington Informer Article: “Congress Must Act to Help Americans with Sickle Cell Disease”

The Washington Informer recently published an article co-authored by SCDAA President, Regina Hartfield, and Former Assistant Secretary of Health, Dr. Brett Giroir, titled, “Congress Must Act to Help Americans with Sickle Cell Disease.” This article highlights why pending legislation addressing SCD is so vital to millions of Americans who have a friend, colleague, or loved one living with the disease. Learn more here.

Sick Cells’ Medicaid Access and Landscape Review Report

In April 2022, Sick Cells conducted a survey of state Medicaid programs. Survey findings were supplemented with an environmental scan to illuminate the state of access to SCD therapies in Medicaid. Learn more here.

SCAGO Resource: “COVID-19 & My Child”

The Sickle Cell Awareness Group of Ontario (SCAGO) released a booklet titled, “Sickle Cell Disease and Covid-19 Vaccines.” This resource provides information on all questions SCD warriors might have before getting a dose of the COVID-19 vaccine. This booklet will enable sickle cell peers to be more confident and make informed decisions before getting the vaccine. Learn more here.

**SCD EVENTS**

SCAGO Webinar: Transition from Pediatric to Adult SCD Care & Post-Secondary Education (11/ 26/22)

The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its annual webinar on achieving success in post-secondary education for SCD warriors on November 26, 2022. This year’s panelists will discuss accommodation for students, mental health wellness, scholarships, and past experiences of individuals living with SCD in post-secondary institutions. This session will be closely followed by the Sunday Afolabi and the Sholape Animashawun Scholarship Award Ceremony. Register to attend here.

3rd Annual NYU PGTME Lunch Time Lecture Series: Gene Therapy for SCD in Pediatrics (11/30/22)

The Pediatric Gene Therapy & Medical Ethics (PGTME) Working Group at the New York University (NYU) Grossman School of Medicine will hold a virtual lunch time lecture series with a session focused on gene therapy for SCD in pediatrics; this session will take place virtually on November 30, 2022, from 12:00pm-1:00pm ET. During this program, diverse stakeholders will discuss current and emerging ethical considerations surrounding pediatric gene therapy research for SCD and will answer questions from audience members. Register to attend here.

64th ASH Annual Meeting and Exposition (12/10/22-12/13/22)

The American Society of Hematology (ASH) is holding its 64th Annual Meeting & Exposition as a hybrid event with in-person sessions in New Orleans, Louisiana, and virtual components for remote attendees. The core meeting dates are December 10 to 13, 2022; however, content will be shared from December 9 to 14, 2022. 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.

**SCD & COVID-19 RESOURCES**

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