New Recommendations Aim to Increase Capacity for Specialized Care for Adults Living with Sickle Cell Disease

On August 12, the directors of top sickle cell disease (SCD) programs in the United States published the first set of recommendations for establishing SCD centers aimed at improving access to care for adults living with this disease. The recommendations, which resulted from a study done in preparation for an American Society of Hematology (ASH) workshop in 2019, outline the essential components that must be in place to establish an adult SCD treatment center.

The recommendations were published in Blood Advances and codify the required components of establishing SCD adult care centers. These requirements include:

• Multidisciplinary, team-based, evidence-guided care that is coordinated throughout the institution
• The SCD center as the recognized authority for managing SCD within the institution
• A physician lead who is considered a SCD specialist
• One or more social workers, a patient coordinator, and dedicated nursing staff
• The ability to offer acute and chronic pain management, transfusion, and access to specialists

CDC Seeks Stakeholder Perspective on Pain by August 21

Want to share your experiences and perspectives on pain and pain management in your own words with the Centers for Disease Control and Prevention (CDC)? CDC has announced an opportunity to help inform understanding of individual stakeholder’s values and preferences related to pain and pain management options. These stakeholders include patients with acute or chronic pain, patients’ family members and/or caregivers, and health care providers who care for patients with pain or conditions that can complicate pain management.  Visit this link to learn more about how you can share your thoughts before August 21.

Be The Match Clinical Trial Finder Expands to Include Interventions to Improve Quality of Life

Now you can use the Be The Match’s Jason Carter Clinical Trials Program Search tool to find clinical trials looking at new ways to improve quality of life for sickle cell disease warriors. This includes tests, tools or programs that may improve overall well-being. For example, these trials may look at interventions to reduce pain or help with medication management, assessing oxygen levels with different activities, and brain scanning techniques to measure blood flow. More trials will be added to this list every week. Check them out.

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!

Update on Dedicated Funding for SCD Data Collection Efforts at CDC

In late July, the U.S. House of Representatives passed its fiscal year (FY) 2021 Labor, Health and Human Services, Education, and Related Agencies (L-HHS) spending bill, which included an amendment that would provide $2 million of dedicated funding for the Sickle Cell Disease (SCD) Data Collection program at the Centers for Disease Control and Prevention (CDC).  The amendment was proposed by Representatives Danny Davis (D-IL) and Michael Burgess (R-TX).

The Senate has yet to act on any of its appropriations bills and it is unknown if the Senate L-HHS appropriations bill, which may be considered in September, will include CDC funding for SCD data collection.  Since the federal fiscal year ends on September 30, Congress may need to pass a short-term funding bill to maintain current funding as of October 1 until the FY 2021 appropriations bills are passed by both the House and Senate and signed into law.  While there is still more distance for this bill to travel before being signed into law, this is a major victory.

Advocates Encourage FDA to Add SCD to Neglected Tropical Disease Priority Review List

On July 17, 2020, the Putting Rare Diseases Patients First! [PRDPF!] group filed a citizen’s petition asking the U.S. Food and Drug Administration (FDA) to add sickle cell disease (SCD) to the Agency’s Neglected Tropical Disease Priority Review List. PRDPF! is an organization focused on providing information to rare disease patients and their families about the clinical trial and drug development process. In the petition, PRDPF! urged FDA to add SCD to the current list given the urgent need for new treatments for SCD and for patients in Africa to gain access to the most basic of treatments, including Hydroxyurea.  They also noted that this addition would help biopharma companies justify investing in therapies or cures for SCD.  For more information about this effort, please contact PRDPF! President Lorna Speid, PhD, MRPharmS.

***SCD AND COVID-19***

SCD and COVID-19 Resources

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

• Centers for Disease Control and Prevention’s Information about extra precautions individuals with SCD can take during COVID-19
• Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion
• American Society of Hematology COVID-19 Resources
  • Checklist for SCD Patients Presenting to the Emergency Department (ED) During Pandemic
  • Frequently Asked Clinical Questions on COVID-19 and SCD
• SCDAA’s Advisory and Resources on SCD and COVID-19 for Community and Providers
  • Health Alert for People with Sickle Cell Disease and their Caregivers
  • Provider Advisory:  An Outline to Decrease Burden and Minimize Morbidity – Guidance for the acute and chronic disease management of individuals with SCD
  • Sub-Saharan African Provider Advisory
• Sickle Cell Community Consortium Offers Resources to Address Challenges of Pandemic
• Be The Match Offers Counseling for Sickle Cell Warriors During Pandemic

***UPCOMING SCD EVENT***

Join ‘SickleTini Saturday’ on August 29 to Benefit SCDAA

Join the Sickle Cell Disease Association of America (SCDAA) for a virtual fundraising brunch on Saturday, August 29 from 12:00 p.m. to 1:30 p.m. ET.  Kick back, hear great live music and learn from guest bartenders how to make delicious specialty brunch beverages (with and without alcohol).  The event will feature special guests SCDAA Celebrity Ambassador Actor Dexter Darden (The Maze Runner, Joyful Noise, Cadillac Records) and SCDAA Child Ambassador Kiarra Roseburgh. Musical artist Karter Jaymes will perform live music. Register for SickleTini Saturday and give to a great cause and help us help those living sickle cell disease.

Virtual Sickle Cell Disease Therapeutics Conference on September 15, 2020

Global Blood Therapeutics (GBT) and the Sickle Cell Disease Association of America (SCDAA) are excited to announce that the 9th Annual Sickle Cell Disease (SCD) Therapeutics Conference (SCDTC) has been scheduled for Tuesday, September 15 starting at 9:00 AM ET.  Conference attendees will hear from innovative industry leaders, patients, physicians, community-based organizations and biotech companies.

This event is open to anyone with an interest in sickle cell and there will be multiple ways to attend!  To learn more about the SCDTC or to register (U.S. only) visit scdconference.com. #SCDTC

Save the Date - SCDAA’s 48th Annual National Convention 2020 Is Going Virtual

Given the current uncertainty regarding COVID-19 and its implications for attendee safety and travel, as well as for public health concerns, the Sickle Cell Disease Association of America’s (SCDAA) 48th Annual National Convention is moving to a virtual gathering on October 14-17, 2020.  Click here for more information.