December 23, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee reminds the sickle cell community that the COVID-19 pandemic is having another increase in infections. New variants like omicron are emerging, as are common for RNA viruses, and vaccination rates need to consequently improve. Vaccinations can protect against severe illness. A new medication might also help as early treatment for infected individuals.

MARAC Recommendations
• No general recommendation for all individuals with SCD to stay home nor for all to return to in-person activities. Patients and families need to make individualized assessments of the risks and trade-offs of returning to work or school in person. Factors to consider include vaccination status, the rate of COVID-19 and variants in your community, family socioeconomic situation, protective measures in the building (proper ventilation, physical distancing, etc.), mental health needs and educational needs.

On December 20, the FDA placed a partial hold on bluebird bio’s clinical program for lovotibeglogene autotemcel (lovo-cel) gene therapy, temporarily stopping testing on study volunteers under age 18. This partial hold was a response to the investigation of one adolescent with sickle cell disease who has persistent anemia (not dependent on transfusion) a year and a half following treatment. Read more.

Adults can continue enrollment and treatment in bluebird bio studies. Other clinical research studies of gene therapy for sickle cell disease are continuing.

The clinical research process has many built-in safety precautions, which include the partial hold implemented by the FDA. MARAC will continue to monitor the situation closely on behalf of the individuals and families living with sickle cell disease.

Welcome to 2023 Celebrating a Second Chance at Life Survivorship Symposium! A week packed full of information, inspiration and community. Learn from our distinguished panel of speakers how to manage the many medical, psychosocial and physical challenges that can arise after transplant.

Please complete the registration below to gain access to all the live and recorded events during the symposium. If more than one person in your household will attend the symposium, please have each person complete a separate registration.

Date:

April 29, 2023 – May 5, 2023

Click Here to Register

This summer, 34-year-old Victoria Gray became the first person in the U.S. to have a gene editing therapy as treatment for sickle cell disease. “It’s a very big deal for me,” Gray said in a national media interview after learning the groundbreaking treatment was working. “It’s the change I’ve been waiting on my whole life.”

Gray, a Black wife and a mother of three from Mississippi, had been living with the complications of the inherited blood disorder that disproportionately affects African Americans for her entire life.

CRISPR is a new technique that involves cutting out a tiny piece of the mutation or defective gene that causes sickle cell disease in the hopes that the corrected gene will then work to make normal hemoglobin (a protein in red blood cells) instead of the sickle-shaped hemoglobin that gives the disease its name.

Learning Objectives:

• Understand how COVID-19 impacts individuals with sickle cell disease (SCD) compared to other those who do not have sickle cell disease

• Does COVID-19 increase the risk of venous thromboembolism among individuals with SCD

• Risk factors for severe COVID-19 illness for individuals with SCD

Speaker:

Dr. Ashima Singh

Assistant Professor in the Department of Pediatrics

Medical College of Wisconsin

Date and Time:

April 21, 2022 (Thursday)

01:00 PM in Central Time (US and Canada)

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The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition.

“SCDAA is excited to again partner with the Phi Beta Sigma Fraternity, and we are honored to have been chosen as a recipient of their donations,” said Regina Hartfield, President and CEO of SCDAA. “Phi Beta Sigma is deeply committed to serving and supporting the community, as is SCDAA. Their support will go far to benefit those living with sickle cell disease.”

The partnership will support the SCDAA and sickle cell community through raising funds, mobilizing blood and bone marrow drives, and collaborating to educate the community about sickle cell disease and sickle cell traits. 

Have you experienced barriers to care in the emergency department? In recognition of World Sickle Cell Day on June 19, the Centers for Disease Control and Prevention is:

• Raising awareness of the barriers people with sickle cell disease face when they come into the emergency department with severe pain, and:

• Highlighting ways emergency providers might improve the quality of care they provide.

Support their efforts by sending them a selfie and finishing one or more of the following statements:

• I like when ED providers…

• If I could change one thing about the care provided to people with sickle cell in the ED, it would be…

• When I have to go to the ED for treatment, I feel…

• One of the things I do in the ED to help manage my pain is…

• When I’m in the ED, I miss out on…

• Or create your own!

The Sickle Cell Foundation of Georgia, Inc. (SCFG), in collaboration with the Georgia Department of Public Health and Morehouse School of Medicine will host a series of free provider seminars beginning in April through July 2022.

Leading the virtual seminars will be James Eckman, MD, Professor Emeritus, Emory University School of Medicine; Otis Powell, MD, Primary Care Provider and SCFG Medical Director, and Jeanette Nu'Man, MEd, Operations Director, SCFG.

The unpredictable and persistent nature of the pain and other complications associated with sickle cell disease (SCD) often poses a difficult challenge for healthcare providers, especially for those unfamiliar with treating people with this disease.

Each virtual session will take place via Zoom. Register online at: https://sicklecellga.org/provider-training/

Date & Time:

Part 1:                                                            

April 8, 2022; 10:00 AM – 12:00 PM

May 20, 2022; 2:00 PM – 4:00 PM

June 24, 2022; 4:00 PM – 6:00 PM

Part 2:

April 29, 2022; 10:00 AM – 12:00 PM

June 10, 2022; 2:00 PM – 4:00 PM

July 1, 2022; 4:00 PM – 6:00 PM

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The Congress will bring together sickle cell diseases (SCD) stakeholders from various sectors, including clinicians, scientists, patients, health policy makers and advocacy groups to catalyze discussion around the achievements and challenges in the diagnosis, treatment and care of people living with SCD globally, as well as the prospects for further progress.

Sickle cell disease is one the world’s most prevalent genetic diseases.  Major advances have been made in understanding the disease, paving the way for new and effective treatments. Neonatal screening is developing in many countries, resulting in early prevention of infections and improved parental education. New preventive treatments for vaso-occlusive crises and chronic anemia are now available.

Date:

June 16-18, 2022

Location:

Novotel Paris Tour Eiffel

61 Quai de Grenelle

Paris, France

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Join Carla Lewis, CEO of Kids Conquering Sickle Cell Disease Foundation and Rae Blaylark, CEO of Sickle Cell Foundation of Minnesota for the Empowered Caregivers Forum.

Host Carla Lewis and Rae Blaylark are mother’s of children born with sickle cell disease. We welcome you to join a forum created to support, educate and share resources with parents/caregivers of a child/children or young adult with sickle cell disease/ trait or thalassemia. The forum will provide a safe place for parents to share & ask questions bridging the gap to important conversations.

Dates & Times:

Session I: Sickle Cell Disease & Sickle Cell Trait: What Should We Know?

April 23, 2022

7:00AM PT / 9:00AM CT / 10:00AM ET

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Session II: Silent Damage and Impact on the Kidneys

July 23, 2022

7:00AM PT / 9:00AM CT / 10:00AM ET

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Session III: Life After Gene Therapy & Stem Cell Transplant

October 8, 2022

7:00AM PT / 9:00AM CT / 10:00AM ET

Click Here for Registration Link

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