SCDC Update, June 2019
HAPPY WORLD SICKLE CELL DAY!
***Today members of the Coalition will be wearing ******red* *to honor those living with sickle cell disease. ***Are YOU wearing red today?** *Share your photos with us by tagging @ConquerSCD on Twitter and we will try our best to Retweet everyone!***
Shine the Light on World Sickle Cell Day - June 19
The Sickle Cell Disease Association of America (SCDAA) is collaborating with SiNERGe on “Shine the Light on Sickle Cell”—a 24-hour national awareness campaign to celebrate the 10th anniversary of World Sickle Cell Day on June 19! The sickle cell community is invited to join and host a local event today. If you are organizing or attending a “Shine the Light on Sickle Cell” event in your community, please email ShineTheLightOnSickleCell@gmail.com with details of your event! Click here for more information.
Coming Together to Confront Sickle Cell Disease
On World Sickle Cell Day, Secretary Alex Azar and Assistant Secretary for Health, ADM. Brett P. Giroir, MD, at the United States Department of Health and Human Services (HHS), reflect on the work being done at the Department, across the country, and worldwide to cure sickle cell disease within 10 years. Read theHHS blog post that honors World Sickle Cell Day.
Congressional Briefing on Progress in SCD Treatment and Policy
On June 18, several members of the Sickle Cell Disease Coalition (SCDC) hosted a briefing on Capitol Hill to educate members of Congress and their staff on how policymakers can help support the development of gene therapies for sickle cell disease (SCD). Key points focused on supporting:
- Funding for the National Institutes of Health;
- Funding for the Sickle Cell Disease Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act; and
- Novel payment models for approved gene therapies
SCDC members co-hosting the briefing included the American Society of Gene & Cell Therapy, American Society of Hematology, American Society for Transplantation and Cellular Therapy, Sickle Cell Disease Association of America, and the Pediatric Hospital Sickle Cell Disease Collaborative. Drs. Punam Malik (Cincinnati Children’s Hospital), Matthew Porteus (Stanford University), and David Williams (Boston Children’s Hospital/Harvard University) along with Francesca Cook, MPH (REGENXBIO) provided remarks.
Facebook Partners with U.S. Blood Organizations to Increase Awareness
Recognizing the need for additional awareness of the need for blood and to help make it easier for individuals to connect with their local blood bank, Facebook formally announced the availability of its Blood Donations tool in select United States markets. The announcement coincided with World Blood Donor Day on June 14, which typically is a challenging time for blood centers due to school breaks and summer vacations. Facebook is currently piloting the tool in Chicago, New York City, San Francisco Bay Area, Baltimore, and Washington, D.C. as part of a nationwide phased rollout that will involve all markets and U.S. blood centers in the coming months. “Through our partnership with Facebook, individuals will be able to conveniently find and connect with their local blood center to help meet the ongoing need for a diverse pool of blood donors in the U.S. and share their experiences and the importance of blood donation,” said Kate Fry, MBA, CAE, Chief Executive Officer at America’s Blood Centers, a Sickle Cell Disease Coalition member. “By encouraging blood donation as a way of life, each of us can assure that the more than 30,000 pints of blood used daily throughout the country is available.” Since Facebook first launched their blood donations feature in October 2017, more than 35 million people have signed up to be donors on Facebook in India, Bangladesh, Pakistan, and Brazil.
Pain Management Best Practices Inter-Agency Task Force Releases Final Report
The Pain Management Best Practices Inter-Agency Task Force overseen by the U.S. Department of Health and Human Services has released its final report on best practices for acute and chronic pain. To ensure best practices for the treatment of pain, the Task Force’s final report underscores the need to address stigma, risk assessment, access to care and education. It also highlights five broad categories for pain treatment: medications, interventional procedures, restorative therapies, behavioral health, and complementary and integrative health approaches. The report includes a section highlighting disparities and unique challenges faced by special populations, including those living with sickle cell disease. Click here to read the full report.
CDC Program Announcements
The Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection (SCDC) Program has the following program announcements:
- Today, in honor of World Sickle Cell Day, CDC is sharing resources for nurses to help improve the health of patients with SCD including “Understanding the Complications of Sickle Cell Disease,” a new article that provides an overview of major SCD-related health complications. For more updates on these resources, follow us on Twitter at @CDC_NCBDDD
- SCDC’s policy memo,Understanding Sickle Cell Disease: CDC’s Role in Surveillance, Education, and Awareness, demonstrates how new and timely national data can allow for better understanding of and improved health outcomes for SCD.
- SCDC Georgia published, “Improving an Administrative Case Definition for Longitudinal Surveillance of Sickle Cell Disease” in Public Health Reports.
- The Spring issue of The Bloodline (SCDC program’s quarterly newsletter) is available .
Cyclerion Sponsors “Men Living Well with Sickle Cell” Town Hall
On June 6, 2019, Sickle Cell Disease Coalition member Cyclerion (formerly Ironwood Pharmaceuticals) sponsored a second town hall focused on “Men Living Well with Sickle Cell” in advance of the Foundation for Sickle Cell Disease Research (FSCDR) Meeting in Fort Lauderdale, Florida. The event was organized due to the overwhelmingly positive feedback from the first town hall on this important topic. Men living with sickle cell disease (SCD) face unique challenges due to societal expectations and cultural stigmas, and as such, many feel discouraged from speaking out about their experiences and advocating for themselves. The FSCDR, Sickle Cell Association of Houston, BlackDoctor.org, and Cyclerion partnership gives men with SCD an opportunity to have a voice and connect with one another through the town hall. The men who participated spoke about issues that are important to them, including participation in clinical trials and personal triumphs while living with SCD. Click here to view the event.
ASGCT Clinical Trials Finder
The American Society of Gene & Cell Therapy (ASGCT) has launched a customizable search engine for active and recruiting trials in gene and cell therapy throughout the United States, including sickle cell disease trials. Data curated daily from ClinicalTrials.gov ensures the most up-to-date and applicable listings anywhere in the field, displayed in a reader-friendly format. ASGCT members who volunteered to assist in the development of the ASGCT Clinical Trials Finder reviewed the relevance of the parameters with which the system pulls in data and created a list of important terms to best identify and categorize ongoing clinical trials. Search the ASGCT Clinical Trials Finder by phase, title, modality, or disease category to find clinical trials applicable to your work and interests.
Scholarships Available for Individuals Living With SCD
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a competitive college scholarship program to assist students with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. IASCNAPA plans to distribute four $1,000 scholarships this year. Applicants must have a form of SCD and be enrolled in, or have been accepted by, a recognized and accredited post-secondary school, including college, university, trade school, or other institution of higher learning. Applications are currently being accepted through July 1, 2019. For more information, to contribute to the scholarship fund, or to apply for a scholarship, click here.
*Upcoming SCD Events*** **
**ASH Research Collaborative Hosts SCD Community Engagement Workshops **
Join the ASH Research Collaborative for a series of fun and engaging Sickle Cell Disease Community Engagement Workshops this spring and summer, throughout the country for individuals living with sickle cell disease and their parents/guardians. The next workshop takes place Saturday, June 22, in Houston, TX! If you would like to participate, please click here to find out more! All workshop participants will receive paid parking, a $50 gift card, as well as lunch, as a thank you for their time. Please see below for a list of upcoming community engagement workshops. If you are interested please email: SCD-CTN@ashresearchcollaborative.org.
SCDAA’s 6th Annual Walk with the Stars** **
Sickle Cell Disease Association of America (SCDAA)’s 6th Annual 1K, 2K, and 5K Walk/Run With the Stars, will be held June 22, 2019, at Canton Waterfront in Baltimore, MD. Walk with the Stars is one of SCDAA’s largest events dedicated to finding better treatments and a cure for sickle cell disease (SCD). Every dollar raised goes towards preventing the complications of SCD through awareness, education, advocacy, and research. To-date, SCDAA has raised over $500,000 from this event for better treatments and improvements in the quality of health for individuals, families, and communities affected by SCD.
ASH Hydroxyurea Webinar
The American Society of Hematology (ASH) will be hosting a webinar about “Hydroxyurea for Sickle Cell Disease” on June 25, 6pm-7pm ET. The webinar will focus on the use of hydroxyurea in young adults and adults. Moderated by Dr. Kim Smith-Whitely (Children’s Hospital of Philadelphia), it will feature speakers Dr. Sophie Lanzkron (Johns Hopkins University School of Medicine) and sickle cell disease (SCD) advocate Kyle Smith. Attendees will have the opportunity to ask questions. Both individuals living with SCD and anyone interested in learning more about the use of hydroxyurea in adults is encouraged to participate. Register here and download ASH’s award-winning informational booklet on hydroxyurea.
Sickle Cell Regulatory Science Consortium
The Critical Path Institute is hosting a kick-off meeting for a Sickle Cell Regulatory Science Consortium on June 27-28, 2019 in Bethesda, MD. Join the brainstorm to form a regulatory science consortium devoted to developing measures for trial endpoints and other tools to aid the FDA and EMA in the evaluation of the safety and efficacy of treatments for sickle cell disease. The following questions will be addressed:
- What clinical outcome assessments (patient-reported, observer-reported, clinician-reported outcome measures, or performance outcome measures) need to be developed?
- What safety biomarkers are most promising?
- What long-term outcomes should be monitored? What standardization of data and protocols is needed?
- How can model-informed drug development be applied to improve trial design?
- What biomarkers and other covariates should be included in disease progression models and clinical trial simulation tools?
6th Annual Sickle Cell Patient & Family Educational Symposium
The Sickle Cell Community Consortium (SCCC) is thrilled to announce the 6th Annual Sickle Cell Patient & Family Educational Symposium (the Warriors Convention) to be held at the Hilton Dallas/Plano Granite Park Hotel from July 24 - 28, 2019. The Warriors Convention is the only national sickle cell meeting designed, created, and hosted by the sickle cell patient and family community. The SCCC is excited to welcome the Sickle Cell Association of Texas Marc Thomas Foundation, the As One Foundation, and Carol’s Promise Sickle Cell Foundation as our co-hosts! This year’s theme is Sickle Siblings: Bonded by Blood. Sponsorship opportunities are available.
- Visit http://www.sicklecellconvention.org/ to learn more.
- Submit an abstract at www.sicklecellconvention.org/abstracts
- Register to attend at www.sicklecellconvention.org
- Apply for a patient/caregiver scholarship at www.sicklecellconvention.org/scholarship
2019 NHLBI Annual Sickle Cell Disease Research Meeting
The 2019 National Heart, Lung, and Blood Institute (NHLBI) Annual Sickle Cell Disease Research Meeting will take place August 26-28, 2019 in Bethesda, MD. This three-day meeting provides a yearly forum for investigators, practitioners, and interested health care providers to discuss the process of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of sickle cell disease, and interact with other investigators and NHLBI program staff in an informal setting. Find out more and register here by August 15!
Sickle Cell Society UK Celebrates 40 Years
Please visit sicklecellsociety.org for more information.
SCDAA National Convention
Sickle Cell Disease Association of America’s 47th National Convention is scheduled for October 9-12, 2019, in Baltimore, MD. The National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD) and sickle cell trait. In an effort to advocate for improved quality of life for individuals and families affected with SCD and its associated morbidity and mortality, the conference fosters the exchange of the latest scientific and clinical information related to the disease. This is done through the offering of innovative symposia, training seminars, interactive panel discussions, and special events. Register today!