United to Conquer Sickle Cell Disease

SCDC Update, January 2021

SCDC Releases Summaries for SCD Community of Key Content from 2020 ASH Annual Meeting and Exposition

The 2020 American Society of Hematology (ASH) Annual Meeting and Exposition featured a myriad of symposia on breaking sickle cell disease (SCD) research and clinical findings. The Sickle Cell Disease Coalition (SCDC) distilled this SCD information presented into plain language summaries for dissemination to the SCD community. Visit the SCDC Newsroom page to read the following summaries: 

January is National Blood Donor Month – Take Action Today 

Celebrate National Blood Donor Month this January by learning from partners about the importance of blood donations for the SCD community and how you can help.

Raise Awareness for Diverse Blood and Convalescent Plasma Donations 

Blood donations are critical for individuals living with SCD who rely on life-saving transfusions to manage their disease and prevent complications. It is essential to have a robust supply of compatible red cells ready, and the best supply source has been found to come from those of similar race and ethnic backgrounds. However, only five percent of blood donors are of African ancestry. The time to change this is now. 2020 highlighted the racial disparities in health care and having a continuous supply of compatible red cells is vital to help reduce this disparity.

How can you help this January?

Cure Sickle Cell Initiative Solicits Public Comments on Draft Common Data Elements and Standard Case Report Forms

The Cure Sickle Cell initiative (CureSCi) is a collaborative, patient-focused research effort launched the National Heart, Lung, and Blood Institute (NHLBI) to accelerate promising genetic therapies to cure SCD. The initiative drafted a set of common data elements (CDEs) and standardized case report forms to advance the collection of data on clinical research studies of genetic therapies for SCD. By standardizing SCD data collection, the initiative hopes to improve data quality, facilitate collection of data, data-sharing and data comparison, and reduce study start-up time and overall study cost.

A public review period for comments on the drafted CDEs and standardized case report forms is open until January 31, 2021. Researchers, providers, and individuals living with SCD are strongly encouraged to provide input to inform the final documents. Access the public review package of SCD CDEs and standardized case report forms here.

Report Published on Medicaid and CHIP Beneficiaries with SCD 

The Center for Medicaid and CHIP Services (CMCS) has released the Medicaid and CHIP Beneficiaries with Sickle Cell Disease (SCD) Report. This report provides national and state-level estimates for SCD among adults and children enrolled in Medicaid and CHIP, who are under age 76, and highlights various demographic, health, and healthcare utilization characteristics. The SCD Report includes national estimates on antibiotic prophylaxis in children with SCD who are enrolled in Medicaid and CHIP. Additionally, the SCD Report features information on recommended screenings and preventive care for children with SCD to highlight opportunities for quality improvement. Please note, the reported analyses are estimates derived from the synthesis of five research-ready files collected from states via CMS’s 2017 Transformed Medicaid Statistical Information System (T-MSIS). As the T-MSIS reporting system is relatively new, not all states’ data were fully robust when the five files were analyzed. Due to the dated nature of these reports and states’ orientation to the T-MSIS reporting system, data estimates may not fully reflect the current state of sickle cell care within CMCS.

Formation of the Africa Sickle Cell Alliance

In December of 2020, the Africa Sickle Cell Alliance (ASA) was established as an umbrella organization of sickle cell organizations, advocates, caregivers, and persons living with SCD working across the continent to advance the rights of those affected by SCD. The virtual launch of this group was termed by the guests, representatives of 25 participating sickle cell associations from 25 nations in Africa, as a historic moment for the continent. This is particularly monumental as it is the very first time in African history that this many stakeholders have joined as one voice to improve access to health care, social and psychological support for persons living with all forms of the SCD. ASA will advocate for governments of all African countries to make SCD a priority health issue, as recognized by the United Nations in its 2008 proclamation, and to form policies that consider the rights of persons living with SCD.

A Big Win for SCD Community

On Dec. 27, 2020, the CLINICAL TREATMENT Act was passed by Congress and signed into law by the President. This Act requires Medicaid to cover routine costs of care when a patient enrolls in a clinical trial and it increases access to clinical trials for some of the most vulnerable patients in the country, including individuals living with SCD. This Act also allows individuals with Medicaid insurance coverage to enroll in clinical trials related to the prevention, detection, or treatment of any serious or life-threatening disease or condition. For reference, about 72 million Americans, or about 20%, are on Medicaid with just over 55,000 of those being individuals living with SCD (cms.gov, 2012).

This major success can be credited to the work of strong alliances built by SCDC members, including Be the Match and others in the SCD community, to increase awareness of the issue. By ensuring access to clinical trials through this Act, patients have a greater chance of finding a life-saving treatment or cure if they are living with a serious or life-threatening disease or condition such as SCD. This policy is effective beginning Jan. 1, 2022.

Increased SCD Funding in Federal Appropriations Bill

The final Congressional omnibus bill of 2020 enhanced appropriations for several important federal SCD program. Notably, the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection program received $2M in funding for FY2021 to expand the program in nine states. This is particularly significant as it is the first-time federal funds have been appropriated by congress directly to the CDC Sickle Cell Data Collection program. This accomplishment is in large part due to the advocacy of SCDC members, as 36 SCD partner organizations sent a joint letter to Congressional leadership advocating for dedicated funding to the program.

Simultaneously, the appropriations bill included an increase of $2M for the U.S. Health Resources & Services Administration (HRSA) SCD Treatment Demonstration Program, which is funded at $7.205M in FY2021. This program aims to enhances the prevention and treatment of SCD through the coordination of service delivery, genetic counseling and testing, bundling of technical services, training of health professionals, and other related efforts in HRSA-designated regions.

Have You Ever Wondered How Specialty Pharmacies Work for SCD Medications?

The way health plans cover medications is not always crystal clear. This is especially true if a doctor is treating someone with a medication that must come from a specialty pharmacy, such as hydroxyurea or voxelotor. To demystify the process of obtaining medications and educate on the role of specialty pharmacies, the Patient Advocate Foundation and content experts developed educational resources on specialty pharmacies, including a new publication in English and Spanish and a webinar. Patient Advocate Foundation is a free support program to assist individuals seeking medical care overcome barriers of access and cost. The program offers one-on-one guidance through their Sickle Cell CareLine to help individuals living with SCD navigate complex health systems. Access to all educational materials is available here.

NHLBI Hope for Sickle Cell Challenge

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 p.m. ET 

  • The submission period ends on March 26, 2021 at 11:59 p.m. ET

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


Register for CDC’s “What’s New in California Sickle Cell Data Collection Program 2021”

The Centers for Disease Control and Prevention (CDC) will be holding a webinar on Wednesday, February 10 from 1:00 p.m. to 2:00 p.m. ET to provide an update on their California Sickle Cell Data Collection program. The program collects data to determine how many people live with SCD and monitor changes in their health over time. This webinar will discuss the California program’s new data sources and data tools, and present on the upgrade to the program’s data linkage system. Register for the webinar today

Register 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 Tuesday, March 2, 2021 from 7:30 a.m. to 3:00 p.m. CT. Please note, the program is free, but pre-registration is required by March 1, 2021.  Register now.

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 and 15.  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.orgRegister here by April 1, 2021. 


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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