United to Conquer Sickle Cell Disease

SCDC Update, December 2020

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

In the wake of the U.S. Food & Drug Administration’s (FDA) COVID-19 vaccine approval, it’s critical we investigate the impact this vaccine may have on the sickle cell disease (SCD) community. On Tuesday, 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 Centers for Disease Control and Prevention (CDC) that informed their recommendation, as well as responses to some frequently asked questions among individuals with SCD about the COVID-19 vaccination. 

Blood Donations and SCD Coalition Releases New Resources on SCD

As COVID-19 cases continue to surge, it is more crucial than ever that we curb the nation’s critically low blood supplies. Blood donations are crucial for individuals with sickle cell disease who rely on life-saving transfusions to treat their disease and prevent complications. To promote awareness about the importance of blood donations and motivate action, the Sickle Cell Disease Coalition (SCDC) launched a new section of the Coalition website featuring a host of resources on blood donations and sickle cell disease. Check out the SCDC Blood Donations page to learn about why donating blood is so important, where you can donate locally, how blood donations are made safe during COVID-19, and what you can do to spread the word. Help promote these new resources by sharing this information with your colleagues and community.

 Watch Six-Part Animated Video Series: Blood Transfusions: What You Need to Know and Do.

A red blood cell transfusion is a common procedure that is usually safe; however, this procedure can sometimes cause health problems, such as infections and iron overload (a buildup of excess iron in the body). Watch the six-part animated video series produced by the Georgia Health Policy Center and the Sickle Cell Community Consortium about what you can do to lower your risk of health problems related to blood transfusions:

Groundbreaking SCD Content Presented at the 62nd ASH Annual Meeting and Exposition

The American Society of Hematology (ASH) held its first all-virtual 62nd Annual Meeting & Exposition in early December. The meeting featured 300+ abstracts related to sickle cell disease (SCD) and several sessions with SCD experts on topics such as ‘omics in SCD, pain management and chronic transfusion support. Abstracts presented on groundbreaking CRISPR/Cas9 gene-editing program sparked interest among attendees and the media. Read more about this revolutionary technology presented at ASH’s Annual Meeting in the Wall Street Journal and Associated Press.  Media also took interest in ASH’s report “New Studies Call Attention to Effects of Structural Inequities on Health in America” and the inherent impact this has on SCD care. The article was underscored by several presentations on, and plentiful media coverage of, COVID-19’s impact on the SCD community, as summarized in MedPage Today’s piece, “Sickle Cell Disease Tied to Worse COVID-19 Outcomes.” An overview of several of these programs and studies will be published in easy to understand language in a future SCDC Update.

Improving Outcomes for Women & Girls: Directory of Clinics and Services for Women and Girls with SCD

The Foundation for Women & Girls with Blood Disorders has created the first searchable online database of clinics dedicated to multi-disciplinary care for females with sickle cell disease (SCD). The Women and Girls with Sickle Cell Disease (WGSCD) Directory provides comprehensive information on the services for women/girls with SCD, many at the 140 federally funded Hemophilia Treatment Centers (HTCs) in the United States. Most HTCs offer a multidisciplinary, comprehensive care model where females are able to see all of the doctors and specialists they need, including a hematologist, nurse practitioners, registered nurses, genetic counselors, physical therapists and social workers; in addition, these clinics have providers with specialized expertise in SCD or trait.

National Alliance of Sickle Cell Centers (NASCC) Launched

Despite the trials of 2020, it has been a year of promise for sickle cell disease (SCD), with efforts to improve access to quality SCD care.  To build on these efforts, the National Alliance of Sickle Cell Centers (NASCC) was launched. The NASCC is a (pending) 501(c)(3) corporation that has the goals to:

  • Provide LEADERSHIP in defining, implementing, monitoring, and evaluating sickle cell centers
  • PROMOTE equitable access to care and therapeutics for individuals living with SCD
  • Advance QUALITY IMPROVEMENT and QUALITY ASSURANCE for comprehensive sickle cell centers  
  • Foster active COLLABORATION with other organizations that share similar goals.  

The NASCC looks forward to collaborating with the SCD community and partners in the service of these goals.  The NASCC Officers include:

  • President:            Julie Kanter, MD, The University of Alabama at Birmingham
  • Vice President:    Sophie Lanzkron, MD, Johns Hopkins School of Medicine
  • Treasurer             Deepa Manwani, MD, Montefiore Medical Center
  • Secretary:            Marsha Treadwell, PhD, UCS Benioff Children’s Hospital Oakland

More information about the inaugural NASCC recognized comprehensive sickle cell centers and the application process for center recognition will be released soon.  Please contact Dr. Julie Kanter jkanter@uabmc.edu with questions.

ASH Recognizes U.S. Assistant Secretary for Health ADM Brett Giroir with 2020 Outstanding Service Award

The American Society of Hematology’s (ASH) recently honored ADM Brett Giroir, MD, Assistant Secretary for Health at the U.S. Department of Health and Human Services (HHS), with the 2020 ASH Outstanding Service Award for his support of hematology research and patient care.  ASH’s 2020 President Stephanie Lee, MD, MPH, of Fred Hutchinson Cancer Research Center noted “ADM Giroir has been a trusted partner and advocate, bringing much needed attention to sickle cell disease, and ensuring that progress in conquering this disease in the United States and across the globe is a top priority for the federal government.”  Read the press release about the award here and watch ADM Giroir’s acceptance speech here.

Co-Pay Relief Program Expanded to Include COVID-19 Payments

The Patient Advocacy Foundation recently broadened their ongoing efforts to support individuals living with sickle cell disease navigate complex disability systems and overcome insurance coverage and financial burdens by expanding their Co-Pay Relief program to include coverage of COVID-19 expenses. The Co-Pay Relief program may provide direct payment for co-payments, co-insurance and deductibles required by a person’s insurance for medications prescribed to treat and manage their disease. The program helps patients on a first-come, first-serve basis and processes applicants in the order in which their completed applications are received. The maximum annual award for a single patient’s COVID-9 care is $500. Click here to learn more about the eligibility criteria. Interested patients, providers, and pharmacies may apply for assistance by calling the Co-Pay Relief team toll-free at 866-512-3861, or by visiting https://copays.org/.

2020 ASH Advocacy Efforts

In 2020, the American Society of Hematology (ASH) continued to work with federal agencies, leaders at the United States Department of Health and Human Services (HHS) and the U.S. Congress to help enhance and expand government activities in sickle cell disease (SCD) research, training, and services.  As part of these efforts, in November, ASH and over 60 SCD partner groups sent a letter to Congressional leaders asking for $5 million of dedicated funding for the SCD Data Collection Program be included in the final House-Senate negotiated omnibus appropriations bill for fiscal year (FY) 2021.  Additionally, ASH has been working with SCD champions on Capitol Hill to introduce legislation that would authorize the Centers for Medicare & Medicaid Services (CMS) to develop a Medicaid demonstration project to improve access to state-of-the-art, high quality outpatient care for individuals living with SCD with a focus on young adults.  See other highlights of ASH’s related efforts over the past year.


SCDAA Webinar on National Academies SCD Report

The Sickle Cell Disease Association of America (SCDAA) will be hosting a webinar on the National Academies of Sciences, Engineering, and Medicine (NASEM) Report: Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020) on Thursday, December 17 from 2:30-3:30 p.m. ET, with guest speaker Dr. Kim Smith-Whitley from the Children’s Hospital of Philadelphia. The target audience for this presentation is people living with sickle cell disease and their caregivers. Those interested in attending should email lwilson@sicklecelldisease.org.

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.

Save the Date and Register for IASCNAPA Sickle Cell Conference

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) Sickle Cell Conference is going virtual! The conference will focus on multi-dimensional care, with a theme of Treating the Whole Person. The dates have changed to April 14 and 15, 2021.  The target audience is nurses, advanced practice providers, social workers, and other non-physician healthcare providers. The IASCNAPA Sickle Cell Nursing Curriculum will be presented during the conference. This curriculum is specific for inpatient nurses who provide care to people living with sickle cell disease. Look out for registration information coming soon at www.iascnapa.org.

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: SCDEvents@cchmc.org. Register here by April 1, 2021.


Recording Available of Webinar on SCD and COVID-19 Management in the Emergency Department

Watch the recording of last month’s Webinar on Sickle Cell Disease (SCD) and COVID-19 Management in the Emergency Department (ED), co-hosted by the American Society of Hematology (ASH), American College of Emergency Physicians (ACEP), and Emergency Department Sickle Cell Care Coalition (EDSC3).  The webinar provided education on how to evaluate and treat individuals living with SCD presenting to the ED with SCD-specific considerations, with a specific focus on:

  • COVID-19 Care & Medical Considerations for Individuals with SCD in the ED 
  • ED Patient Flow & Operational Considerations 
  • Pain Management for Individuals with SCD in the ED During the Pandemic  
  • Providing Social & Emotional Wellness for Individuals with SCD During the Pandemic 

The webinar also highlighted several COVID-19 resources, including ASH’s Checklist for SCD Patients Presenting to the ED During the Pandemic and Frequently Asked Clinical Questions on COVID-19 and SCD.

Access Educational Videos from 7th Annual Sickle Cell Disease Patient & Family Educational Symposium

The Sickle Cell Consortium (SCC) held the 7th Annual Sickle Cell Disease Patient & Family Educational Symposium from November 19 through November 22.  This year the Convention was entirely digital and focused on a series of Community Conversations featuring Warrior Patients and Caregivers, with the theme “Citizen Scientist: Harnessing the Power of the Patient and Caregiver Voice.” While the Symposium is over, nine educational classrooms based on these Community Conversations are still accessible. Visit these classrooms to explore educational videos on a variety of topics, including natural treatments, mental health, emergency department care, and more.  

“Women’s Wellness: A United Sickle Cell Disease (SCD) Virtual Conference” Recording Available Now

Last week the Australian Sickle Cell Advocacy (ASCA) and Maryland Sickle Cell Disease Association (MSCDA) co-hosted a pre-recorded virtual conference on women’s wellness while living with sickle cell.  Many SCD Coalition partners contributed to a robust discussion on practicing self-care, manifesting a spirit of hope, creating financial well-being, and many other facets of wellness. You can still learn from this diverse group of experts by watching a recording of the “Women’s Wellness: A United Sickle Cell Disease (SCD) Virtual Conference” on MSCDA’s website, ASCA’s website, or ASCA’s YouTube channel.

SCD and COVID-19

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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