United to Conquer Sickle Cell Disease

SCDC Update, March 2021


Groundbreaking DNA Discovery Could Lead to
New Ways to Reduce Pain Crises

A recently published study supported by the National Heart, Lung, and Blood Institute (NHLBI) unveiled the potential impact of DNA on sickle cell disease (SCD). Swee Lay Thein, MB, DSc, Chief of the Sickle Cell Branch at NHLBI, and her team discovered that red blood cells from people with sickle cell anemia often retain mature mitochondrial DNA after it should be expelled. This retainment of mature mitochondrial DNA disrupts cell function, which can lead to inflammation and pain crises. By further studying mitochondrial DNA in individuals with SCD, researchers can use this information to track disease progression and explore treatments that target mitochondrial DNA. 

CDC and ASH Release Fact Sheets for Community on SCD

The Centers for Disease Control & Prevention (CDC) in partnership with the American Society of Hematology (ASH),  released the “Steps to Better Health for People with Sickle Cell Disease” toolkit, which contains the following fact sheets:

  • Overview: Summarizes the common complications of SCD, including blood clots and heart, lung, and kidney problems, and provides links to more detailed fact sheets about each complication. 
  • Blood Clots: Provides steps to lower your risk of blood clots. 
  • Heart: Provides steps to manage high blood pressure.
  • Lungs: Provides a checklist of the signs and symptoms of lung problems.
  • Kidneys: Provides steps to manage and treat kidney issues, such as too much protein in the urine, anemia related to chronic kidney disease, and end-stage kidney disease. 
  • 3 Tips for Safe Use of Medicines: Provides tips for safe use of medicines prescribed for common complications of SCD.

Updated SCDAA MARAC Advisory Statement Regarding Temporary Suspension of Gene Therapy Clinical Trials

The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) has issued an updated statement regarding the temporary suspension of gene therapy clinical trials. These recently suspended trials include bluebird bio’s LentiGlobin Gene Therapy for SCD trial; National Heart, Lung, and Blood Institute’s Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for SCD trial; and Aruvant’s Gene Transfer for Patients with SCD trial. Read the updated statement here.

Novartis and Bill & Melinda Gates Foundation Collaborate on Gene Therapy Research for SCD

In mid-February, Novartis and the Bill & Melinda Gates Foundation announced a collaboration to discover and develop an in vivo gene therapy for SCD that can be delivered as a single injection. The aspiration is to deliver a curative treatment that could be readily distributed to patients living in regions carrying the greatest disease burden, such as sub-Saharan Africa. Read the official press release to learn more.

NMQF Announces New Publication on Vaso-occlusive Crises and the Costs of SCD 

The National Minority Quality Forum (NMQF) recently published a manuscript on SCD in the Journal of Medical Economics entitled “Vaso-occlusive crises and costs of sickle cell disease in patients with commercial, Medicaid and Medicare insurance.” The publication contributes to the documentation of the health care and cost burdens associated with vaso-occlusive crises in people living with SCD and suggests that research may be warranted into new therapies to reduce this burden.

CDC’s SCD Data Collection Program Expands to 11 States 

In March 2021, the CDC’s Sickle Cell Disease Data Collection program expanded from nine to 11 states. The program determines the number of people living with SCD and monitors changes related to their health over time. 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

Design Opportunity for Artists Living with SCD 

Cayenne Wellness Center is seeking a sickle cell warrior artist to design a t-shirt for their SCD Emerging Adults Transition Program: I’M READY. 

Design Requirements:

  • Include the name of the program on the t-shirt.
  • Choose a theme that aligns with the goals of the program: to increase readiness and success of transition from pediatric to adult care.

The deadline for submissions is March 26, 2021. For more information about this opportunity, email info@cayennewellness.org.

ESCF Study: “Sickle Cell and My Mental Health” Seeking Expert Partners 

SCD remains an important topic for discussion, research, innovation, and quality improvement globally. A key issue within the SCD field is a lack of understanding of the social, emotional, and psychological effects on one’s mental health and well-being throughout the lifespan. The European Sickle Cell Federation (ESCF) – an SCD advocacy organization led by patients and patient advocates – has embarked on a research project to better recognize, understand, and support the mental health of individuals living with SCD. This research study aims to characterize mental health disparities faced by individuals living with SCD, with a special focus on the mental impacts of Vaso-occlusive crises. ESCF welcomes partnership with expert clinicians, psychologists, researchers, and patients on this project. For information or to partner with, please contact; David Zachary Issom (david.issom@escfederation.eu) and Lora Ruth Wogu (loraruth@escfederation.eu).

UPCOMING SCD EVENTS

Cayenne Wellness Hosts Second Seminar  on the Brain and SCD

Cayenne Wellness is hosting a three-part seminar series, sponsored in part by Global Blood Therapeutics, focusing on the medical (neurological/developmental), neuropsychological, behavioral, and educational aspects of the neurocognitive (brain) complications of SCD.  The second seminar in this series focuses on “The Brain and Mood Disorders in SCD” and will take place on March 20, 2021 from 11:00 a.m. to 1:30 p.m. PST. By recognizing these issues earlier in life, patients, families, and caregivers can actively discuss their concerns with their providers in an informed manner, and advocate for necessary treatments and services.  Attendees will also learn how mood and thoughts can impact individuals living with sickle cell. Register to attend 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.

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The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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