United to Conquer Sickle Cell Disease

SCDC Update, April 2020

**Sickle Cell Disease (SCD) and COVID-19 Programs and Resources**

Surveillance Registry for COVID-19 in SCD Launched

In March, a group of sickle cell providers from the Medical College of Wisconsin launched the Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion (SECURE SCD Registry). The registry is designed to capture pediatric and adult COVID-19 cases that are occurring across the world in individuals living with sickle cell disease (SCD). The goal of the registry is to report on outcomes of cases of COVID-19 in this population of patients. Providers who care for individuals with SCD are asked to report all of their cases of COVID-19 to this registry. The reporting of each case takes approximately 5-10 minutes. The site also provides regularly updated summary information and, as of April 8, had 46 cases reported. If you have any questions, please contact covid.sicklecell@mcw.edu.

SCDAA’s Updated Advisories on SCD and COVID-19 for Community and Providers

The Sickle Cell Disease Association of America (SCDAA) and its Medical and Research Advisory Committee continue to provide timely updates to their advisories on COVID-19 and sickle cell disease (SCD). The following advisories were updated on April 10: 

ASH Resources for Hematologists During the COVID-19 Crisis, with SCD-Focused Information

The American Society of Hematology (ASH) has developed and is maintaining a webpagecontaining a series of resources to assist hematologists in navigating the COVID-19 public health crisis and to provide a medium to exchange information. The webpage includes Frequently Asked Clinical Questions on COVID-19 and Sickle Cell Disease (SCD), as well as links to other SCD specific resources.

America’s Blood Supply Impacted by COVID-19 – Donate Today 

There is an ongoing need for blood. Blood donation is safe and needed.

The blood community continues to face challenges to maintaining the blood supply and collection in the United States as result of the COVID-19 pandemic. The SCD Coalition is especially concerned about an adequate blood supply for individuals with sickle cell disease (SCD) for whom transfusions are lifesaving and prevent complications, including devastating complications such as stroke. The need for blood remains during the pandemic and countless individuals with SCD and others across the nation will continue to rely on blood donors to help provide a life-saving component of their health care. If you are healthy, consider donating today. Click here for frequently asked questions about donating blood during the COVID-19 pandemic. To find a local blood collection site and to schedule an appointment, please contact one of the following organizations: 

ASH and SCDAA Letter on Impact and Management of Blood Shortage on SCD 

On March 25, the American Society of Hematology (ASH) and the Sickle Cell Disease Association of America, Inc. (SCDAA) sent a letter to the American Red Cross, AABB, and America’s Blood Centers about the impact of the looming national blood supply shortage is having on individuals with sickle cell disease (SCD) who are transfusion dependent. The letter includes guidance for providers who care for individuals with SCD to help conserve red cell units and encourage donation and recruitment. ASH and SCDAA encouraged the groups to implement programs to enhance minority donor recruitment during the COVID-19 pandemic and offered to partner with the groups to help maintain a strong blood supply and practice judicious use of blood products while maintaining utmost patient safety and outcomes.

Hydroxyurea Could Prevent Strokes for People with Sickle Cell Disease in Lieu of Transfusions During COVID-19 Blood Supply Shortage

The COVID-19 pandemic threatens to cause a blood supply shortage in the United States, and as a result, clinicians may be compelled to ration or conserve blood products. For people living with sickle cell disease (SCD), blood transfusions are often necessary to decrease the frequency of severe symptoms. In a new Blood paper, Michael R. DeBaun, MD, MPH, of Vanderbilt University Medical Center, Vanderbilt-Meharry Sickle Cell Disease Center of Excellence, suggests that while monthly blood transfusions are the standard method of stroke prevention for children with SCD and at high risk of strokes, initiation of hydroxyurea therapy may be an effective alternative, if the monthly blood transfusions are interrupted. The paper presents the advantages and challenges of stroke prevention treatment without regular blood transfusion availability and suggests that low-dose hydroxyurea, with consideration of increasing the dose later, should be started immediately to offer clinical benefits and pose minimal risks to children living with SCD at risk for strokes.

Global Partners Present Scientific Symposium on COVID-19: Perspectives from Africa

On April 8, several global partners, including DICOTA, SickleInAfrica, Sickle CHARTA and H3ABioNet, convened a virtual Scientific Symposium on COVID-19: Perspectives from Africa. Speakers from around the world addressed COVID-19: Current Trends in Africa; Biology and Epidemiology of COVID-19; Genomics of COVID-19 Virus; SCD and COVID-19; and Opportunities for Research on COVID-19. A recording of the program is available here.

Sickle Cell Aid Foundation Expands Work in Nigeria through Registry Efforts

The Sickle Cell Aid Foundation (SCAF) is committed to ensuring that people with SCD in Nigeria are protected and provided for during the COVID-19 pandemic. SCAF is seeking to expand its database of individuals living with SCD in Nigeria. The aim of this database is to register everyone with SCD irrespective of their social class for easy reach by SCAF and other stakeholders. During the COVID-19 pandemic, SCAF will provide critical information and mental health support for all individuals with SCD as well as welfare packages, inclusive of free drugs for the less privileged warriors. Register for the database at scaf.org.ng/covid-19.

Additionally, SCAF is registering any incidence of COVID-19 among SCD warriors across Nigeria. The goal of this registry is to build best practices on treatment plans and disseminate across all isolation facilities in the country, while also conducting research. For more information and/or partnership, please contact: scafnigeria@yahoo.com.

Be The Match Keeps Patient and Donor Health at the Forefront During COVID-19 Pandemic

Patient and donor safety is Be The Match’s top priority. During this time, Be the Match’s staff is continually monitoring the COVID-19 pandemic guidance from the American Society of Hematology (ASH), American Society for Transplantation and Cellular Therapy (ASTCT), Centers for Disease Control and Prevention (CDC), and World Health Organization (WHO). Their group is in frequent contact with donors to provide support and answer their questions during these challenging times. For patients whose donors may be international, Be The Match has received a waiver on the travel ban for couriers coming into the U.S from Europe, allowing couriers to transport the life-saving cells without delay. Learn more about Be The Match’s response to COVID-19

**Other SCD News**

ASH Releases NEW Clinical Practice Guideline on Cerebrovascular Disease in SCD

In 2016, the American Society of Hematology (ASH) initiated an effort to develop clinical practice guidelines on sickle cell disease (SCD). ASH appointed 61 clinical experts, five methodologists and 10 patient representatives to review evidence and form recommendations on SCD. The recommendations address treatment of both adult and pediatric SCD and the systematic review of evidence was led by the Mayo Clinic Evidence-Based Practice Center. Earlier today, ASH published the third chapter of the SCD guidelines on: cerebrovascular disease in SCD. In total, five chapters will be published with the remaining two chapters scheduled to be published later in 2020. Learn more about these guidelines, the development process, and find additional resources by visiting hematology.org/SCDguidelines

New Article – Clarification on Pain Management Recommendations for Cancer and Sickle Cell Disease

On April 7, 2020, the Journal of Oncology Practice featured an article on Bridging the Gap Among Clinical Practice Guidelines for Pain Management in Cancer and Sickle Cell Disease (SCD). The article shares the findings from a late 2018 meeting where representatives from the American Society of Hematology (ASH), National Comprehensive Cancer Network (NCCN), American Society for Clinical Oncology (ASCO), Centers for Disease Control and Prevention (CDC), and the U.S. Food and Drug Administration (FDA), convened to address the perceived variance among clinical practice guidelines for disease management in patients with cancer and those with SCD. 

The PAN Foundation Opens New Sickle Cell Disease Patient Assistance Fund

On April 10, 2020, The Patient Access Network (PAN) Foundation, an independent, nationwide 501(c)(3) organization dedicated to providing help and hope to underinsured patients who are unable to afford the out-of-pocket expenses for their prescribed medications, opened a new patient assistance program for people living with sickle cell disease (SCD). PAN President and CEO Dan Klein said, “Now, more than ever, is an especially difficult time for people managing underlying health conditions like SCD. In the face of this ongoing pandemic, we remain committed to reducing the financial burden of out-of-pocket costs and providing patients with uninterrupted access to vital medications.” People who qualify are eligible to receive $4,000 per year in financial assistance to pay for the deductibles, co-pays and coinsurance costs associated with their treatment for SCD. To learn more about the eligibility requirements and how to apply, please visit The PAN Foundation’s online patient portal, or call 1-866-316-7263.

**Upcoming SCD Events**

Save the Date: IASCNAPA Conference Rescheduled to 2021 

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) Sickle Cell Disease Conference: Treating the Whole Person, is rescheduled to April 9, 2021, at the Memphis Hilton in Memphis, TN. All registration fees for the 2020 meeting have been refunded. For questions or sponsorship information, please contact admin@iascnapa.org.

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