United to Conquer Sickle Cell Disease

SCDC Update

Watch a New CDC Expert Commentary on Medscape About Transfusions in Sickle Cell Disease

The Centers for Disease Control and Prevention (CDC), a member of the Sickle Cell Disease Coalition, invites healthcare providers to watch Dr. Mary Hulihan, a Health Scientist in the Division of Blood Disorders at the CDC, in a new CDC Expert Commentary on Medscape. In the video, Dr. Hulihan discusses the scenarios in which transfusions are appropriate for patients with sickle cell disease, the complications associated with transfusions, and how to reduce the risk of complications from transfusions. Watch the video here. The CDC Expert Commentary on Medscape is a special collaboration between the CDC and Medscape. The series is intended to provide information for physicians, nurses, pharmacists, and other healthcare professionals.

ASH’s New President, a SCD Expert 

Last month, the American Society of Hematology (ASH), a member of the Sickle Cell Disease Coalition, announced Dr. Alexis Thompson as the Society’s 2018 President. Dr Thompson, a world-renowned expert in sickle cell disease and thalassemia, is interested in enhancing the trainee pipeline in hematology, particularly in non-malignant hematology. She will also focus on ASH’s global strategy to promote the best science and patient care throughout the world, and foster international collaborations in hematology, including expansion into regions with unmet scientific and medical needs such as Latin America and Africa. Read the full announcement here.

Children’s National Health System Hosts SCD Event at NMAAHC

On Tuesday, February 6, 2018, 200 Children’s National Health System leadership, along with government officials, leading sickle cell experts, and advocates, including representatives from several Sickle Cell Disease Coalition member organizations, convened at the National Museum of African American History and Culture in Washington, DC. The purpose of the evening event, A Global Imperative: Delivering Brighter Futures for Families with Sickle Cell Disease, was to spread awareness about sickle cell disease (SCD) and showcase the work that is currently being done to improve SCD outcomes. The event included speeches by both U.S. Senator Corey Booker and U.S. Surgeon General Jerome Adams about the importance of a national investment in SCD research, and specifically spoke to the value of surveillance and establishing a standard of care, among other efforts.

Why You Don’t Hear Much About Sickle Cell Anymore  

On Monday, February 5, 2018, National Public Radio hosted a segment on sickle cell disease (SCD) entitled, “Why You Don’t Hear Much About Sickle Cell Anymore” hosted by Joshua Johnson of the 1A show. The panel of guests included Jenny Gold, a senior correspondent from Kaiser Health News, Dr. Sophie Lanzkron, Director of the Sickle Cell Center for Adults at Johns Hopkins School of Medicine, and Efa Ahmed-Williams and Marquis Valentine, both SCD patients and advocates. The one hour conversation tackled how discrimination may affect the level of attention SCD receives, and why only two drugs exist to treat SCD, a disease that afflicts about 100,000 Americans. You can listen to a recording of the episode at the1a.org.

Improving Assessment and Treatment of Acute Vaso-occlusive Crisis

Pfizer and the American College of Emergency Physicians (ACEP) are collaborating to offer a new grant opportunity focused on supporting quality improvement initiatives that will result in more timely assessment and treatment of acute vaso-occlusive crisis pain for adults with sickle cell disease treated in Emergency Departments in the United States and Canada. The intent of this opportunity is to encourage organizations with a focus in healthcare professional education and/or quality improvement to submit a proposal in response to a Request for Proposal (RFP) that is related to closing gaps in care in a specific disease state, therapeutic area, or broader area of educational need. If you are interested in applying please click here, and notify Riane Gay via email at (rgay@acep.org). All complete proposals received by March 8, 2018, will be considered. Please feel free to contact Riane at rgay@acep.org if you have any questions.

Indiana Sickle Cell Consortium Holds Sickle Cell Advocacy Day

Dr. Emily Meier, a representative of the Sickle Transplant Alliance for Research, a member of the Sickle Cell Disease Coalition (SCDC), attended a Sickle Cell Advocacy Day at the Indiana Statehouse on January 29, 2018. The purpose of the event, hosted by the Indiana Sickle Cell Community Consortium, was to raise legislators’ awareness of the plight of more than 1,000 Hoosiers who suffer from sickle cell disease (SCD) and to seek additional funding and support for programming for adults living with SCD. Public health stakeholders Carl Ellison, President/Chief Executive Officer of the Indiana Minority Health Coalition, and Dr. Virginia Caine, Director of the Marion County Public Health Department provided remarks about the need for increased support of those living with SCD. Dr. Meier’s advocacy is only one example of how SCDC members are active advocates at the local, state, and national level.

FDA Meeting on Opioid Policy

On Tuesday, January 30, 2018 the U.S. Food and Drug Administration (FDA) held a public meetingentitled “Opioid Policy Steering Committee— Prescribing Intervention – Exploring a Strategy for Implementation.” The purpose of the public meeting was to receive stakeholder input on how FDA might, under its Risk Evaluation and Mitigation Strategy (REMS) authority, improve the safe use of opioid analgesics by curbing overprescribing to decrease the occurrence of new addictions and limit misuse and abuse of opioid analgesics.  Given the implications this issue has on the sickle cell community, we wanted to share that the FDA is still accepting electronic or written comments to the public docket through March 16, 2018. Submit electronic comments to Regulations.gov. All comments must be identified with the docket number FDA-2017-N-6502.

Explore Free SCD Education and Resources

The National Marrow Donor Program (NMDP)/Be The Match, a member of the Sickle Cell Disease Coalition, has a variety of free sickle cell disease (SCD) and transplant-related resources for patients and health professionals.  The following two items were recently added to the list of information and resources.

• New! Clinical trial for patients with Sickle Cell Disease
The Centers for Medicare and Medicaid Services (CMS) recently approved a new Coverage with Evidence Development (CED) clinical trial called “Prospective Assessment of Allogeneic Hematopoietic Cell Transplantation in Patients with Sickle Cell Disease” (17-CMS-SCD). Medicare will cover all clinical trial costs for eligible Medicare beneficiaries who are enrolled in the clinical trial. Learn more about details and eligibility at CIBMTR.org/studies/clinicaltrials.

• Sickle cell disease Booth in a Box available for your next community event
Sickle Cell Disease Booth in a Box is a free toolkit that includes an array of patient-centered educational resources and giveaways to educate people about transplant for SCD. It can be used at community health fairs, conferences and other events. Reserve your Booth in a Box today. Questions about Booth in a Box? Contact Lensa Idossa, MPH: lidossa@nmdp.org.

Upcoming SCD Events

Spotlight on Sickle Cell Disease Facebook Live Broadcast
On Friday, February 23, 2018, from 12:00-1:00 pm ET, join a Spotlight on Sickle Cell Disease Facebook Live broadcast, sponsored by Novartis, a member of the Sickle Cell Disease Coalition. A panel featuring Dr. Biree Andemariam (UConn Heath and Chief Medical Officer of the Sickle Cell Disease Association of America) and other special guests will discuss the social and emotional impact of sickle cell disease. Tune in to ask questions and join the conversation, moderated by television health expert, Dr. Dave. To learn more and participate in the event, visit the Facebook page at www.facebook.com/SpotlightOnSickleCellDisease.

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

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