SCDC Update

CDC’s Sickle Cell Data Collection Program Expands to Nine States

The Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection program gathers health information from multiple sources to determine how many people live with the disease and monitor changes related to their health over time.  In 2020, CDC funded the expansion of the program from two to nine states to collect essential data on sickle cell disease (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. 

Learn about the informative work of the Sickle Cell Data Collection program in Georgia by viewing the recently developed program brief and interactive maps.

APHON 2021 Call for Hematology Abstracts

The Association of Pediatric Hematology and Oncology Nurses (APHON), is currently accepting abstracts for their 45th Annual Conference and Exhibit on October 27-30, 2021 in Salt Lake City, Utah.  APHON aims to include a hematology track into their schedule and is looking to include a wider variety of topics for attendees, including red cell disorders like sickle cell disease and thalassemia.

For additional information about the call for abstracts and to get started, visit the APHON website. The abstract portal closes March 1, 2021 at 11:59 pm EST.  APHON is currently planning a hybrid event and will be able to accommodate both in-person and remote presentations for abstracts that are accepted. Please contact the APHON Education Manager, Jennifer Schap (jschap@aphon.org) with any questions.

Check out additional details on APHON’s Hematology Initiatives.

NMDP/Be The Match offers Family Typing Grant

Patients exploring the possibility of bone marrow transplant as a treatment option for their sickle cell disease (SCD) may qualify for the National Marrow Donor Program (NMDP)/Be the Match’s Family Typing Grant. This grant helps pay for intermediate resolution typing of family members, including siblings, children, and parents. A healthcare professional must complete the application on behalf of the patient. To  learn more about their patient financial assistance program, visit the NMDP/Be The Match’s Patient Financial Assistance website.

Introducing Sickle Cell Talks with Agnes: An Australian Sickle Cell Advocacy, Inc. Initiative

The Australian Sickle Cell Advocacy, Inc., a non-profit organization established to support people impacted by sickle cell disease (SCD) in Australia, has hosted webinars discussing SCD-related topics to raise awareness throughout the pandemic. To build on this effort, the group just announced the official launch of their new virtual talk show Sickle Cell Talks with Agnes, their Founder and Executive Director. Check out the Sickle Cell Talks with Agnes Facebook page for more information and email info@scd.com to inquire about sharing a personal experience with SCD on the show.

De Montfort University Releases Free Sickle Cell and Social Sciences Lecture Series

Curious about the social and political aspects of sickle cell disease (SCD)? Check out this free series of lectures and workshops on the social aspects of sickle cell designed for university-level students. Based on his upcoming book Sickle Cell and Social Sciences, sociologist and De Montfort University professor Simon Dyson delivers twelve lectures on sickle cell topics ranging from genetic screening to demography to athletics; these lectures are accompanied by eight workshops that dive into more background detail on issues. Click here to learn more.

Patient Advocate Foundation’s Scholarship for Survivors Program Accepting Applications

On June 26, 2021, the Patient Advocate Foundation (PAF) will move forward with its 21st A Promise of Hope Affair, an annual fundraising gala held in support of PAF’s Case Management services and its Scholarship for Survivors program. The PAF Survivors Scholarship program provides financial support to undergraduate and graduate students who have been diagnosed with or treated for a cancer or chronic disease.

Meet awardee Kaela, a student living with sickle cell supported through the program. “I graduated Magna Cum Laude with a B.S. in Interdisciplinary Science and a minor in Chemistry.  I am now a second-year medical student and serve on the executive board for the Student National Medical Association and am a member of the 12CrP program which focuses on working with the underserved communities.  I am extremely grateful to PAF for their support and investment in my future to pursue internal medicine-pediatrics as a trained hematologist.”

The application deadline is March 1, 2021; visit the Scholarship for Survivors application website to apply.

Sickle Cell and Cellular Therapy Articles in February 2021 Issue of AABB News

AABB News is AABB’s monthly print magazine offering news and feature stories on critical issues affecting transfusion medicine, cellular therapies and patient blood management. The magazine’s February 2021 issue featured several articles on sickle cell disease (SCD) and cellular therapy research:

• Read “Cellular Therapies Fueling New Treatment Options for Hemoglobinopathies” to gain a better understanding of SCD, the evolution of gene editing techniques, and how increased awareness of social biases that have previously thwarted treatment advancements, are now advancing development of promising new therapies.
• Read “New Therapies for SCD” to learn how researchers are increasingly looking to cellular therapies to advance therapeutic options for patients.

NHLBI Hope for Sickle Cell Disease Challenge: Registration Ends on February 26

The National Heart, Lung, and Blood Institute (NHLBI) is hosting a Hope for Sickle Cell Disease (SCD) Challenge to improve awareness about SCD and address the associated myths and stigmas.  This Challenge encourages college and graduate students to develop innovative information dissemination tools, instruments, or devices that help spread evidence-based information about SCD, so that people living with the disease can live better, healthier lives. The NHLBI will award a total of $50,000 to up to three winners.

• The registration period ends on February 26, 2021 at 11:59 pm EST 
• The submission period ends on March 26, 2021 at 11:59 pm EST

Visit the NHLBI Hope for Sickle Cell Challenge webpage for more information.

UPCOMING SCD EVENTS

IASCNAPA Webinar: Perspectives on Sickle Cell Disease and COVID vaccines

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) is hosting a webinar with Dr. Lewis Hsu, Chief Medical Officer of the Sickle Cell Disease Association of America (SCDAA) and pediatric hematologist at University of Illinois-Chicago, on the COVID-19 vaccines and SCD community. Dr. Hsu will discuss vaccine hesitancy within the SCD community with healthcare providers. The webinar will be held on February 19, 2021 from 1:30 to 2:30 pm CST. Registration is free though required to attend. Register here and send any questions for Dr. Hsu to admin@iascnapa.org. 

Cayenne Wellness Hosts Three-Part Mini Seminar Series on Mental Health and Sickle Cell Disease

Cayenne Wellness, a California community-based organization, will be hosting a three-part seminar series on mental health challenges associated with sickle cell disease (SCD). This seminar series aims to prepare individuals living with SCD and their family to recognize mental health issues earlier in life, actively discuss concerns with their providers in an informed manner, and advocate for necessary treatments and services. The first session will feature Dr. Charles Jonassaint, who is a practicing clinical health psychologist with expertise in chronic disease self-management and cognitive behavioral therapy intervention and has had extensive experience working with the SCD community. This free seminar will take place February 20, 2021 from 11:00 am to 1:30 pm PST; register here to attend.

As a follow-up to each seminar, Cayenne Wellness will be hosting a fun, stress relieving activity to promote mental health. The first activity will be a Paint Night on February 27, 2021 at 3:00 pm PST. All seminar attendees will receive $15 off the ticket price. The discount code will be provided at the end of the seminar. Click here to register and learn more.

Virtual Sickle Cell Day at the Georgia Capitol

In celebration of Black History Month, the Sickle Cell Foundation of Georgia, Inc. (SCFG) wants to increase awareness about the impact of sickle cell on the Black community. The SCFG will be advocating for initiatives that increase public awareness, research, support systems, and funding for sickle cell.  The SCFG invites Georgia residents to attend their virtual Sickle Cell Day at the Georgia Capitol event on February 25, 2021 from 2:00 pm to 4:00 pm EST to learn more about these advocacy efforts and how they can become involved. Register to attend here.

Register by March 1 to Attend a Free Symposium on SCD: What’s New with Transplant and Gene Therapy

The Doris Duke Charitable Foundation and St. Jude Children’s Research Hospital are co-hosting a virtual symposium entitled Sickle Cell Disease (SCD): What’s New with Transplant and Gene Therapy? The symposium is targeted for SCD researchers and health care providers and will focus on understanding new technologies related to hematopoietic stem cell transplantation and gene therapy. This free symposium will be held March 2, 2021 from 7:30 am to 3:00 pm CST. Please note, the program is free, but pre-registration is required by March 1, 2021.  Register now.

Attend Virtual Training on P.O.W.E.R ECHO Project for Community-Based Organizations (CBOs)

The P.O.W.E.R ECHO Project Community Health Worker Training is designed to assist community health workers with resources and education to strengthen their efforts in providing support services for people living with sickle cell disease (SCD). The P.O.W.E.R ECHO Project uses the ECHO telecommunication model to offer community health workers online training services on emerging and current SCD topics. Join SCDAA and the P.O.W.E.R ECHO Project team in their two upcoming training sessions:

• Telehealth Resources for CBO
  • When: March 2, 2021 at 12:00 pm EST
  • Presenter: Christine Calouro, Policy Associate, National Telehealth Policy and Resource Center
• Community Health Workers, Patients with SCD & Hospital Relationships
  • ​​​​​​​When: March 11, 2021 at 12:00 pm EST
  • Presenter: Dr. Melodie Hunnicutt, Executive Director, James R. Clark Memorial Sickle Cell Foundation ​​​​​​​

The Inaugural FSCDR Behavioral Science Symposium - Sickle Cell Disease: Matters of The Heart

The Foundation for Sickle Cell Disease Research’s (FSCDR) Inaugural Behavioral Science Symposium will feature the following sessions:

• State of Mental Health in Sickle Cell Disease (SCD)
• Biology of Stress and its Effects
• COVID-Related Medical Changes / Telehealth Experiences for Individuals with SCD
• Plenary Session on Effective Therapies for Mental Health in SCD  
• COVID-19 Vaccination Stress for Individuals with SCD

The Symposium will take place virtually on March 5, 2021 from 10:30 am to 3:00 pm EST. Registration for individuals living with SCD, or an SCD caregiver is $20. Registration for physicians, executives, nurses, physician assistant and social workers is $40. Continuing Medical Education (CME) credit will also be offered. Register here.

Register for IASCNAPA Conference SCD: Treating the Whole Person in April

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) is hosting a virtual sickle cell conference on April 14-15, 2021.  Registration is open to all SCD healthcare providers, people with SCD, their caregivers, and advocates. The conference will address: 

• Understanding Newborn Screening Results for SCD
• Global Nursing and SCD
• Having Those Difficult Conversations: Mental Health and SCD
• Optimizing Advanced Practice Providers for the National Management of SCD
• Cumulative Provider Grief: What is it and how do we process it?
• What Do SCD Consumers Want from Healthcare Providers?

There will be a speed networking opportunity during the conference for attendees.  Registration is free; however, pre-registration is required.  For more information or to register, visit the IASCNAPA Conference website.

Register for the 2021 Virtual Hemoglobinopathy Counselor Training Course

The 2021 Hemoglobinopathy Counselor Training Course will be presented virtually by Cincinnati Comprehensive Sickle Cell Center on April 14-15, 2021.  The training course will use lectures and discussion to prepare clinicians and hemoglobinopathy counseling professionals to work effectively with patients with hemoglobinopathies by increasing their knowledge of hemoglobin disorders and variants. The registration fee is $250 and nursing and social work continuing education credits will be available.   For more information, please email: SCDEvent@cchmc.org. 

Register here by April 1, 2021. 

SCD & COVID-19

New Resources Released on mRNA Vaccines for COVID-19

The American Society of Gene and Cell Therapy (ASGCT) is sharing reliable and unbiased educational resources to explain how the mRNA vaccines work and why they are safe and effective. Since many of the society’s members are scientists who have spent years researching mRNA biology and its potential use in vaccines, ASGCT is well positioned to share this knowledge. This unit of resources includes a short video, FAQ, and an infographic. Please share these resources broadly to inform, ease fear, and celebrate this accomplishment in the gene therapy field.

SCDAA’s Medical and Research Advisory Committee Recommends the COVID-19 Vaccine for Individuals with SCD

In December of 2020, the Sickle Cell Disease Association of America’s (SCDAA) Medical and Research Advisory Committee (MARAC) released an advisory statement recommending that people with SCD receive the COVID-19 vaccination. MARAC’s advisory statement outlines current information from the CDC that informed their recommendation, as well as responses to some frequently asked questions among individuals with SCD about the COVID-19 vaccination. 

Sickle Cell Disease (SCD) and COVID-19 Resource and Information 

Visit the SCD Coalition website for timely information and resources on COVID-19 and its impact on the SCD community. The SCD and COVID-19 resources, developed and shared by providers and community organizations, offer guidance on care management, blood donation information, fundraising opportunities, counseling services, and more.