SCDC Update

Exciting SCD News from Capitol Hill 

Last month, sickle cell disease (SCD) advocates celebrated as important SCD legislation was considered on Capitol Hill. On February 28, Dr. Robert Brodsky, American Society of Hematology (ASH) Secretary, Dr. Biree Andemariam, Sickle Cell Disease Association of America (SCDAA) Chief Medical Officer, and three individuals affected by sickle cell disease (SCD), participated in a roundtable discussion on SCD. This discussion, hosted by Senator Cory Booker (D-NJ), followed the introduction of SCD legislation in the U.S. Senate. The Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act (S. 2465), sponsored by Senators Tim Scott (R-SC) and Booker, reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA), and authorizes the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to better understand the prevalence and distribution of SCD and its associated health outcomes, complications, and treatments. ASH, SCDAA, and 65 other organizations, including many Sickle Cell Disease Coalition Members, have endorsed the Senate bill. Similar legislation (H.R. 2410) sponsored by Representatives Danny Davis (D-IL) and Michael Burgess (R-TX) passed in the U.S. House of Representatives on February 26. A webcast of Senator Booker’s SCD roundtable is available online. The SCD community’s steadfast advocacy efforts were critical to the introduction of this legislation. SCD advocates can continue this momentum by participating in ASH’s online advocacy campaign to encourage your Senators’ support for the legislation. 

SCDAA Welcomes New President & CEO

The Sickle Cell Disease Association of America welcomed Beverley Francis-Gibson

as the organization’s new President and Chief Executive Officer. Francis-Gibson officially began her new role on March 5, and brings over 20 years of diverse experience as a nonprofit leader; most recently serving as the Executive Director for the National Alliance on Mental Illness of Howard County in Columbia, Maryland. Over the course of her career, Francis-Gibson has led organizations in achieving their mission, vision and strategic priorities. Read Ms. Francis-Gibson’s message to the community here. 

Improving Emergency Care Delivery to Sickle Cell Patients  

Jon Mark Hirshon, MD, PhD, MPH, FACEP, co-chair of the Emergency Department Sickle Cell Collaborative, a member of the Sickle Cell Disease Coalition, spoke with podcast host, Ryan Stanton, MD, FACEP, about improving emergency care delivery to individuals with sickle cell disease (SCD). Their discussion focused on frequent emergency department (ED) utilization as it relates to the SCD process, and addressed the unique, clinical challenges of this population. Listen to learn more about how EDs can improve the way they treat SCD – from eliminating bias, to evaluation and aggressive treatment, to utilizing individual care plans with appropriate follow up. The podcast can be found on ACEP Frontline – Emergency Medicine. 

When to Transfuse? - Webinar 

One of the key educational needs for providers treating patients with sickle cell disease (SCD) is transfusion medicine and knowing when to transfuse. The American Society of Hematology (ASH) launched its new education series on SCD, with a one-hour webinar on transufsion medicine that discusses randomized control trials, acute and chronic transfusion care, complications, choice of blood product, and alloimmunization. The webinar features Dr. Jo Howard from the Guy’s and St Thomas’ NHS Foundation Trust, Dr. Victor Gordeuk from the Sickle Cell Center at the University of Illinois at Chicago, and Dr. Karina Yazdanbakhsh from the New York Blood Center. Click here to view this recorded webinar on ASH on Demand. 

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. IASCNAPA has two scholarship funds: The Steven Christy Scholarship Fund and the Christine A. Johnson Scholarship Fund.  For more information, to contribute to the scholarship fund, or to apply for a scholarship, go to www.iascnapa.org.

How Long Has CDC Been Monitoring Sickle Cell Disease?

To find the answer to this question, the Centers for Disease Control and Prevention (CDC) invites you to check out a new fact sheet about CDC’s history of sickle cell disease (SCD) surveillance (monitoring), which began in 2010. SCD surveillance involves collecting information on diagnoses, treatment, and healthcare access for people with SCD in the United States. Click here to learn more about SCD and CDC’s work in helping those with SCD live longer and healthier lives. 

Spotlight on Sickle Cell Disease - Facebook Live

Last month, Devin and Jason McCourty, professional football players and sickle cell disease (SCD) advocates joined a Spotlight on Sickle Cell Disease Facebook Live broadcast discussion with Dr. Biree Andemariam, Director of the New England Sickle Cell Institute and Chief Medical Officer of the Sickle Cell Disease Association of America, and KC Morse, an aspiring actress and young woman living with SCD. The program, sponsored by Novartis, was moderated by television health expert Dr. Dave Montgomery. The panel discussed the disease’s social and emotional impact and answered a broad range of questions on SCD from live viewers. You can watch the full video here.

Call for Abstracts - SCDAA 46th Annual National Convention  

The Sickle Cell Disease Association of America is calling for abstracts for its 46th Annual National Convention, which will be held October 10-13, 2018, in Baltimore, MD. If you are a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people with sickle cell disease and their families, SCDAA wants to highlight your work. Abstracts are due June 15.

Abstract Categories Include:

• Community Based Research

• Clinical Research

• Public Health, Policy, and Psychosocial Research

• Basic Science and Translational Research

Abstracts will be reviewed and ranked by the national abstract review committee. Abstract finalists will be judged during oral presentation at the convention and the “Best Abstract” in each category will be announced at the conclusion of the convention. Special awards for the best student and trainee abstracts will also be given. To submit an abstract, click here. 

 

Upcoming SCD Events 

Learning for Life Forum on Hydroxyurea- Myths & Facts

The Sickle Cell Awareness Group of Ontario (SCAGO), a member of the Sickle Cell Disease Association of Canada, will be holding a Learning for Life Forum on Hydroxyurea- Myths and Facts on March 24, 2018, from 12-4:00 pm ET at the Children’s Hospital of Eastern Ontario in the Max Keeping Wing, Room 1308, in Ottawa, Canada. This event is free to attend, but requires registration. Please email southeastern@sicklecellanemia.ca if you are interested in attending.  

FDA Meeting on Patient Focused Drug Development for Opioid Use Disorder  

On April 17, 2018, the U.S. Food and Drug Administration (FDA) is conducting a public meeting on Patient Focused Drug Development for Opioid Use Disorder (OUD) to gain first-hand accounts from those with OUD to inform drug development efforts in this area. FDA is interested in learning about the patients’ perspectives on OUD, including the effects on their health and well-being that have the greatest impact on daily life, their experience using prescription medical treatments, and other treatments or therapies for OUD, and challenges or barriers to accessing or using medical treatments for OUD. Given the implications this issue has on the sickle cell community, we wanted to share information about this event. This meeting is a part of FDA’s ongoing work aimed at reducing the impact of opioid abuse and addiction. Learn more and register to attend in person or via live webcast.

2018 Foundation for Sickle Cell Disease Research and Educational Symposium

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The next annual FSCDR symposium will take place June 15-17, 2018 in Washington, DC. Registration is now open.

Additional details will be forthcoming. If you have any questions please send them to Rusinel.amarante@nih.gov or Jessica.peterson2@nih.gov