United to Conquer Sickle Cell Disease

SCDC Update, September 2019

Happy Sickle Cell Awareness Month!

To celebrate, this month we are highlighting programming and events from not only SCDC Members, but the broader SCD community!

Sickle Cell Disease Coalition Convenes for 2nd Annual Meeting

On Friday, September 13, the Sickle Cell Disease Coalition (SCDC) convened for its second in-person meeting at the American Society of Hematology (ASH) Headquarters in Washington, DC.  The meeting was chaired by 2018 ASH President and sickle cell disease expert, Dr. Alexis Thompson. Over 70 representatives from the Coalition’s member organizations, including public health, research and provider organizations, patient groups, federal agencies, industry, and private sector groups were in attendance. The agenda included individuals with SCD in each session. Topics covered included a proposal for the development of a SCD Learning Network, advancements in curative therapies, global initiatives, and several inspiring personal stories. Blaze Eppinger, from the Sickle Cell Foundation of Georgia, presented the keynote address, which focused on his personal experiences living with the disease and what led him to advocacy. The meeting ended with breakout sessions that focused on how the Coalition can help tackle global, access, and research SCD issues. Make sure to follow the Coalition on Twitter and subscribe to the monthly SCDC Update to stay informed.  

GBT Announces Acceptance of New Drug Application

Earlier this month, Global Blood Therapeutics (GBT) announced that the U.S. Food and Drug Administration accepted for filing the company’s new drug application for voxelotor, an oral once a day therapy in development for the treatment of sickle cell disease (SCD). If approved, voxeletor would be the first therapy available to individuals living with SCD that targets hemoglobin polymerization, which is the root cause of SCD damage. Read GBT’s full announcement, here

Call for Abstracts - Annals of Emergency Medicine SCD Supplement 

The Office of Minority Health in the U.S. Department of Health and Human Services (HHS) is sponsoring a sickle cell disease (SCD) supplement in Annals of Emergency Medicine, a leading journal published by the American College of Emergency Physicians. The goal of this supplement is to raise awareness and improve the knowledge of emergency clinicians regarding challenges of individuals living with SCD, current best practices, and potential future treatment modalities. Clinicians, researchers, social scientists, individuals living with SCD, and other SCD stakeholders are invited to submit an abstract by Thursday, October 31, 2019. Click here for more information. 

ICER to Review SCD Therapies 

On August 9, the Institute for Clinical and Economic Review (ICER) announced that it plans to assess the comparative clinical effectiveness and value of crizanlizumab and voxelotor, two not-yet-approved therapies for the treatment of sickle cell disease. The assessment will continue through March 2020, with the final report slated for April 2020. ICER is currently soliciting public comments on their Draft Scoping Document, with a deadline of September 20. Please click here for a detailed timeline from ICER and more information about this review. 

HCUP Releases Statistical Brief on Inpatient Stays Among Individuals with SCD

In early September, the Healthcare Cost and Utilization Project (HCUP) released a statistical brief on Characteristics of Inpatient Hospital Stays Involving Sickle Cell Disease, 2000-2016.  HCUP is a family of health care databases and related software tools and products developed through a Federal-State-Industry partnership and sponsored by the Agency for Healthcare Research and Quality (AHRQ). This brief presents:

  • Statistics on inpatient stays among patients with SCD.
  • Historical trends by patient age from 2000 through 2016 using the National (Nationwide) Inpatient Sample (NIS).
  • Characteristics of inpatient stays with and without SCD in 2016, overall, and by whether SCD (i.e., a principal diagnosis) or a secondary diagnosis (i.e., a condition that coexists at the time of the inpatient stay) was the reason for the stay.
  • SCD-related stays with respect to whether a pain crisis was present.
  • Costs, length of stay, and 30-day all-cause readmission rates following stays involving SCD. 

The Sickle Cycle Podcast

On this episode of the Sickle Cycle Podcast, Dr. Sophie Lanzkron, Director of the Sickle Cell Center for Adults at The Johns Hopkins Hospital, discusses her journey and love for hematology, an overview of hydroxyurea as an option for individuals with SCD, and quality care for individuals with SCD. The Sickle Cycle Podcast is a monthly conversation about all things related to SCD. Explore the complexities of this inherited blood disorder with Charlotte Curtis and special guests. Learn about resources and treatments on ways to improve the quality of life for those impacted by this global disease.This episode is available on soundcloud and itunes.

Presidential Message

On September 1, the White House issued a statement commemorating September as National Sickle Cell Awareness month. The statement reaffirmed the administration’s commitment to increasing the quality, affordability, and accessibility of different treatment options and acknowledged the challenges faced by patients. To read the full statement, click here

Social Media Campaign 

This month, Red Connect Ng is sharing tips on how to live a stable, healthy, and happy life with sickle cell disease on Facebook, Twitter, and Instagram with the social media campaign: 30 Days Sickle Strong. Make sure to follow them on all social media platforms!

CDC Honors SCD Awareness Month

In honor of Sickle Cell Awareness Month, the Centers for Disease Control and Prevention (CDC), Division of Blood Disorders is sending weekly emails throughout September covering various topics related to SCD. These emails will be sent to CDC’s blood disorders listserv. The following topics will be covered:

  • Week 1 – Transition
  • Week 2 – Safe and Healthy Transfusions
  • Week 3 – Diversity in SCD
  • Week 4 – SCD Surveillance and Publications

CDC Feature on the Impact of SCD on Caregivers.

Did You Know? (DYK?) Transfusions in Sickle Cell Disease. Did You Know? (DYK) is a weekly, subscriber-based feature produced by the Center for State, Tribal, Local, and Territorial Support (CSTLTS). DYK communicates usable, actionable information in a quick, simple format to inform state, tribal, local, and territorial health officials, and anyone who subscribes to a broad range of topics. 

Enter Essay Contest to Win Cash Prize

Hektoen International, an online journal of medical humanities invites you to submit an essay of under 1,600 words on the subject of blood. The winner will be awarded a $3,000 prize, and the runner up will be awarded $800. They will consider essays on pioneers in hematology, historical aspects of blood transfusion, artificial blood, blood banks, blood diseases such as sickle cell disease, and more! The deadline for submissions is January 15, 2020. Email submissions to contest@hektoeninternational.org and visit HEKINT.ORG for contest details. 

**ACEP SCD Podcast Episodes **

This month, listen to two sickle cell disease related podcasts from the American College of Emergency Physicians:

Treating Sickle Cell Disease in the ED

Dr. Ryan Stanton (Central Emergency Physicians) and his guest Dr. Caroline Freiermuth (UC Health) discuss treating individuals with SCD when they present to the Emergency Department. Click here to listen to the episode.

Sickle Cell Disease and the Pediatric Patient 

Dr. Ryan Stanton (Central Emergency Physicians) and his guest, Dr. Patricia Kavanagh (Boston University), discuss caring for the pediatric patient with SCD. While some areas of the country see more presentations of SCD than others, it is important to be prepared. Dr Kavanagh is the Chair-elect of the Emergency Department Sickle Cell Care Coalition (EDSC3). Click here to listen to the episode.  

Join a Network to Help More Individuals with SCD Access Needed Appointments

Despite national guidelines, a recent multiyear national study showed that a majority of individuals living with cell disease (SCD) miss follow-up appointments for their care—appointments that have the potential to improve their overall health. A new initiative led by the National Institute for Children’s Health Quality is seeking opportunities for improving appointment attendance. Interested in supporting change? Take these two actions:

Sickle Cell and Transplant Social Media Toolkit

As part of Be The Match’s efforts to educate patients about the cure for sickle cell disease, they are offering a social media toolkit for the month of September. Posts for a variety of channels cover topics including:

  • The cure exists
  • Transplant is a treatment option
  • Be The Match supportive services

To access the toolkit, contact Sarah at srockhol@nmdp.org to obtain copy and graphics.  

Find Sickle Cell Clinical Trials

The Jason Carter Clinical Trials Program can help individuals living with sickle cell disease (SCD) find and join clinical trials. The program offers support from a clinical trial specialist, access to a travel grant, and a simple search tool. You can even set up an account to get automatically notified when new trials for SCD open. Visit JCCTP.org/Sickle-Cell to see what clinical trials for SCD are enrolling participants. Order an SCD Booth in a Box for Sickle Cell Awareness Month EventsSickle Cell Disease Booth in a Box is a free toolkit that can be used at community health fairs, conferences and other events. It gives you an array of patient-centered educational resources and giveaways to educate patients and health professionals about transplant for SCD. Learn more and reserve your Booth in a Box today!Questions about Booth in a Box? Contact Amber Ruffin, MPH: aruffin@nmdp.orgSickle Cell Science: Path to Progress Webinar Series

The National Heart, Lung, and Blood Institute and key partner agencies and institutions will host a four-part webinar series in September to highlight Sickle Cell Awareness Month. Every Wednesday in September from 1-2pm ET, the webinar presenters will address some of the educational and informational needs expressed by patients, family members, researchers, health care providers, and others in the sickle cell disease community. The webinar series will cover implementation efforts in the United States and worldwide, and will address genetic therapies, bone marrow transplants and other therapies, and progress in pain management. The last webinar is scheduled for next week:

  • September 25: Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research (CME available for this webinar)

Plan on tuning into the webinar? Follow the conversation on Twitter using #ScienceofSCD.

Sickle Cell Awareness Month Events

Click here to view the full list of events. 

  • Balco Medical Centre, India - All Month 
  • Sickle Cell Foundation of Georgia - All Month
  • Sickle Cell Foundation of Tennessee - All Month
  • Overlook Medical Center, New Jersey- September 20
  • DreamsiCkleKids Foundation, Nevada - September 21
  • Children’s Healthcare of Atlanta, Georgia - September 21
  • Howard University, Washington DC - September 21
  • Akron Children’s Hospital, Ohio - September 21
  • Cincinnati Children’s Hospital, Ohio - September 21
  • National Association of Hispanic Nurses, ONLINE - September 25
  • Sickle Cell Foundation of Minnesota, St. Paul - Septmeber 27
  • Sickle Cell Foundation of Minnesota, Minneapolis - September 28
  • McMaster University, Canada - September 28
  • East Carolina University, North Carolina - September 28
  • Kids Conquering Sickle Cell Disease, Florida- September 28 

Upcoming SCD Events 


Sickle Cell in Focus Conference 2019

Sickle Cell in Focus (SCiF) will be held for the second time in Kingston, Jamaica on October 10-11, 2019. The 13th annual SCiF conference will be co-hosted by the National Heart, Lung, and Blood Institute and The University of West Indies. SCiF is a two-day, intensive, educational update on sickle cell disease. This year’s conference will focus on the management of commonly encountered sickle-related complications, curative therapies, and a reality check on current treatment options - blood transfusion, hydroxyurea and L-glutamine. At the end of each day, there will also be two complex debates which focus on topical issues for which there is no clear answer. This two-day intensive educational conference is geared towards clinicians, academics, and other healthcare professionals involved in sickle cell disease around the world. Click here to learn more, and to register. 

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. This year’s keynote speaker is Dr. Amanda Brandow, from the Medical College of Wisconsin, who will address “The Study of The Microbiome in Sickle Cell Disease Pain.” Dr. Brandow’s research is focused on understanding the pathophysiology of acute and chronic pain in children and adults living with SCD. Click here to learn more and register today!

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