United to Conquer Sickle Cell Disease

SCDC Update, September 2020


National Academies Releases Strategic Plan and Blueprint for Addressing Sickle Cell Disease 

On September 10, the National Academies of Sciences, Engineering, and Medicine released a new report entitled Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, which provides a blueprint and eight overarching strategies for improving health care for the approximately 100,000 people in the United States living with sickle cell disease (SCD).   It recommends medical and social supports to ensure a safe transition from pediatric to adult SCD care; longitudinal data collection to inform care for SCD throughout the life span; metrics to assess the quality of SCD care; and new payment models for currently available and pipeline treatments.  The report also calls for the National Institutes of Health (NIH) to fund research on non-opiate and palliative pain management approaches.

35 SCD Partner Groups Release State of Sickle Cell Disease 2020 Report Card

Earlier today, 35 Coalition member groups released the State of Sickle Cell Disease (SCD) 2020 Report Card.  To highlight the urgent need for change, in 2016 and 2018 SCD stakeholder groups issued report cards on the state of the disease based on surveys of individuals with SCD, family members, caregivers, health care providers, researchers, advocates, industry representatives, and global health leaders. In 2020, SCD stakeholder groups conducted a follow-up survey to measure progress. While the 2020 report card suggests we are making progress in most areas, the scores also indicate that we have much to do to improve the state of care for those living with SCD. Click here to view the 2020 report card and click here to spread the word about it via social media.

Sickle Cell Disease Coalition Convenes Virtually for 3rd Annual Meeting

On Monday, September 14, over 80 representatives from the Sickle Cell Disease Coalition (SCDC) convened virtually for the 3rd Annual Coalition Meeting.  The meeting was Chaired by Dr. Kim Smith-Whitley, from the Children’s Hospital of Philadelphia and Co-Chair of the SCDC’s Working Group on Research and Clinical Trials.  The group discussed the impact of COVID-19 and social justice issues on SCD, and opportunities for the SCDC, as a collective group, to address these critical topics.  The group also previewed highlights of SCDC activities over the past year, the State of Sickle Cell Disease: 2020 Report Card and the recently released National Academies’ report on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.  Make sure to follow the Coalition on Twitterto receive real-time updates about Coalition activities.

Special SCD Supplement Published in Annals of Emergency Medicine

The Office of Minority Health of the U.S. Department of Health and Human Services (HHS) sponsored a special supplement on sickle cell disease (SCD) in the Annals of Emergency Medicine. The supplement was published last week and aims to highlight the critical role of emergency departments (ED) as frontline health care facilities for SCD care and to identify potential areas for improvement that can be achieved through increased collaboration between emergency physicians, hematologists, and individuals with SCD and their families. The 13 articles in the supplement address broad topics relevant to SCD care, including common clinical presentations in ED settings, as well as emerging diagnostic modalities and barriers to care. Four articles discuss the patient and caregiver experience and psychosocial factors, such as patient stigma and implicit bias.

CMS Releases Data Brief on Medicaid and CHIP Beneficiaries with Sickle Cell Disease

On September 14, the Centers for Medicare & Medicaid Services (CMS) released an infographic entitled At a Glance: Medicaid and CHIP Beneficiaries with Sickle Cell Disease (SCD).  There are a number of telling facts highlighted in the infographic; such as, in 2017, there were 41,995 Medicaid and CHIP beneficiaries with SCD. And, only 59% of the children under age 2 with SCD had at least one pneumococcal vaccination. CMS plans to release a more comprehensive report on this data soon.

Be The Match Celebrates Sickle Cell Awareness Month with Sickle Cell Connect – Remaining Programs on Sept. 17 & 24

Join Be The Match for the final two virtual programs in a three-part series called Sickle Cell Connect. They are convening passionate individuals and organizations to raise more awareness for sickle cell disease and treatment options, the resources and support available, and the action others can take to help the sickle cell warrior community.  Some special guests include, Staci Arnold, MD, Nia Franklin, former Miss America, and Mapillar Dahn, My Three Sicklers’s President and Founder.  Learn more at sicklecellconnect.com.

SCDAA Celebrates Sickle Cell Awareness Month

Sickle Cell Disease Association of America will participate in National Sickle Cell Awareness Month in September by holding a series of events and supporting the events of member organizations. SCDAA’s theme for this year is Sickle Cell Matters. Learn more about how you can join SCDAA at one of the many great events to support sickle cell awareness!

New Website Launched to Learn about How You Can Advocate for Better Care in Sickle Cell

In partnership with leading patient advocacy organizations, bluebird bio has launched SparkSickleCellChange.com. This website is meant to serve as an educational resource to improve understanding of sickle cell.  The website aims to highlight the impact of sickle cell disease on patients, their families, and the societal ecosystem through the amplification of the voices and stories of those living with and caring for those with the disease. Click here to learn more and sign up to Be The Spark for Change in Sickle Cell.

CDC’s Sickle Cell Data Collection Program Announcements

The Sickle Cell Data Collection (SCDC) program determines the number of people living with sickle cell disease (SCD) and monitors changes related to their health over time.

  • September Sickle Cell Awareness Month: CDC will be sharing resources on surveillance, diversity among the SCD community, common complications of SCD, and more. Follow us on Twitter at @CDC_NCBDDD to stay updated.
  • American Sign Language (ASL) Video: CDC recently produced an ASL video that shares the reasons why it’s important for African Americans to give blood to help people with SCD stay healthy.  Watch the video and share it with your community!
  • “California Institute for Regenerative Medicine (CIRM)” Webinar: On September 28, 2020, 10:00am-11:30am PST, CEO and President of CIRM Maria Millian, will present on what’s new at the California agency, which funds stem cell research and on programmatic updates related to SCD. Register here.
  • New Publication: Aluc A, Zhou M, Paulukonis ST, Snyder AB, Wong D, Hulihan MM. Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005-2016. Ped Hem Onc. DOI: 10.1080/08880018.2020.1779886.

IASCNAPA Announces Scholarship Recipients

This year, the International Association of Sickle Cell Nurses and Professional Associates’ (IASCNAPA) Steven Christy and Dr. Christine Johnson scholarships went to three extremely qualified candidates. All winners have sickle cell disease and managed to pursue a post-secondary education despite the challenges of living with a chronic illness. 

  • The first recipient is pursuing a Doctorate in Pharmacy at the University of Arkansas. She graduated with a bachelor’s degree in Biochemistry with a GPA of 4.0 and conducted research at the University of Arkansas on “Evaluation of Neuro-protective Potential of Anti-meth Gene Therapy.”
  • The second recipient is pursuing a second bachelor’s degree in nursing at Chamberlain University all while receiving monthly transfusions. She graduated with her Bachelor of Science degree in Health Sciences from California State University, East Bay.
  • The third recipient is pursuing a Bachelor’s in Nursing at night while maintaining a full-time day job. She had a stroke at age seven but still manages to maintain a “B” average. In addition to working and going to school, she finds time to volunteer at Medical University of South Carolina’s Children Hospital, Community Food Bank, and My Sister’s House – a domestic abuse shelter for women and children.

***SCD AND COVID-19***

SCD and COVID-19 Resources 

The following links are frequently updated with timely information for the community and providers.

***UPCOMING SCD EVENTS***

National Partners Host Twitter Chat on SCD

The Office of Minority Health (OMH) at the U.S. Department of Health and Human Services (HHS) will host a Twitter chat with the National Heart, Lung, and Blood Institute (NHLBI) and the American Society of Hematology (ASH) on Tuesday, September 22, 2020 at 2:00 p.m. ET in observance of Sickle Cell Awareness Month. The chat will focus on highlighting the challenges faced by minority populations, specifically in the African American and Hispanic/Latino communities, as it relates to sickle cell disease (SCD), especially during the COVID-19 pandemic. The chat will also highlight HHS’s efforts and commitment to improving the quality and duration of life of people living with SCD.  Follow the conversation on Twitter using the hashtag #LetsChatSickleCell and www.twitter.com/minorityhealth.

Be the Match Sickle Cell Policy Forum

Be The Match is hosting a Sickle Cell Policy Forum on Thursday September 23 at 6:00 p.m. ET where an esteemed panel of sickle cell community members, medical providers, and Georgia State Senators and Representatives will discuss policy and health care access barriers that the sickle cell community face and solutions on how to improve them. Register here.

Register for SCDAA’s 48th Virtual Annual National Convention 2020

Registration is open for the Sickle Cell Disease Association of America’s (SCDAA) 48th Annual National Convention scheduled for October 13-17, 2020. This year’s theme is Promising Future of Sickle Cell Disease: Every Voice Counts. Join hundreds of healthcare professionals, patients, families, community based organizations, community leaders and advocates this engaging and educational multidisciplinary conference.  Visit the Conference Webpage to register and learn more about the program.

Spread the Word

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

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