United to Conquer Sickle Cell Disease

The State of Sickle Cell Disease

To highlight the urgent need for change, in 2016 and 2018 SCD stakeholder groups issued report cards on the state of the disease based on surveys of individuals with SCD, family members, caregivers, health care providers, researchers, advocates, industry representatives, and global health leaders. In 2020, SCD stakeholder groups conducted a follow-up survey to measure progress. While this 2020 report card suggests we are making progress in most areas, the scores also indicate that we have much to do to improve the state of care for those living with SCD.

Learn more about the activities in each category that contributed to progress over the past two years.

Access to Care in the U.S.

Training and Education

  • Several SCD-focused education and training programs were launched or enhanced, including:
    • In November 2019, ASH hosted the first annual SCD Adult Care Centers Workshop to train health care professionals to establish a clinical center focused on the needs of adults living with SCD.
    • In 2018, ASH released a series of free, web-based videos designed to supplement education in benign hematology for fellows, which includes SCD modules.
    • Over the past two years, several programs to improve the primary care provider’s knowledge and co-management support to care for individuals with SCD were launched and/or expanded, including:
      • The HHS Office of Minority Health (OMH) developed a new pilot Sickle Cell Disease (SCD) Training and Mentoring Program (STAMP) to train primary care providers on the basics of SCD.
      • The National Medical Association offered new SCD-focused educational and training programs at their live meetings, including a program on the transition of pediatric to adult care in SCD.
      • The Health Resources and Services Administration and the HHS Office of the Assistant Secretary for Health expanded the ECHO Program for SCD training.
    • The Sickle Cell Disease Association of America developed a Community Health Worker Training Program that covers the core competencies of community health workers and includes additional concentration on sickle cell disease.

Research and Clinical Trials

  • In 2018, the National Heart, Lung, and Blood Institute (NHLBI) launched the Cure Sickle Cell Initiative to accelerate the development of genetic therapies to cure SCD, with the goal to move these potential cures into first-in-human clinical trials in the next five to ten years.
  • In 2018, ASH and FDA convened a workshop to identify uniformity and global standards for clinical trial endpoints used to evaluate new therapies for sickle cell disease.
  • The ASH Research Collaborative (RC) was launched in 2018 to foster collaborative partnerships to accelerate progress in hematology and sickle cell disease is a major component of its work.
    • In 2020, the ASH RC SCD Clinical Trials Network (CTN) started to onboard clinical sites.
    • In 2019 the ASH RC SCD CTN hosted a series of SCD Community Engagement Workshops across the United States for those living with SCD to better understand their perspective on clinical research.
    • In 2019, the ASH RC Data Hub started to collect SCD data submissions.
  • Progress continues with new sickle cell disease therapies. The FDA approved two new SCD therapies in 2019. There is also a robust SCD pipeline with over 40 therapies in development. Additionally, there continue to be advancements with potentially curative therapies (BMT, Gene Editing and Gene Therapy) for SCD.
  • The National Marrow Donor Program/Be The Match launched the Jason Carter Clinical Trials Program (JCCTP) to help sickle cell warriors find and join clinical trials for sickle cell disease.
  • Over the past two years, several collaborative efforts to accelerate the development of SCD therapies were launched, including:
    • The Center for Medical Technology Policy’s (CMTP) is developing the Core SCD Project to develop consensus on critical outcomes in SCD clinical research.
    • In 2018 the Critical Path Institute (C-Path) assembled a consortium of stakeholders to focus on developing therapies for SCD.

Global Issues

  • The Consortium on Newborn Screening in Africa (CONSA), a collaboration between ASH and African hematologists, was launched to evaluate the effectiveness of newborn screening and early therapeutic interventions for babies with SCD in sub-Saharan Africa.
  • HHS and other global health leaders and partners are developing a Global Coalition to End Sickle Cell Disease to support a major initiative to address SCD in Africa, which includes screening, early intervention, and the provision of hydroxyurea.
  • The Global Alliance of Sickle Cell Disease Organizations was launched in early 2020 with the mission to reduce the global incidence of SCD and ensure equitable access to optimal care and treatment by all people with SCD worldwide.
  • In 2019, the National Institutes of Health (NIH) and the Bill & Melinda Gates Foundation committed to investing $100 million over the next four years to speed the development of affordable gene therapies for sickle cell disease and the human immunodeficiency virus (HIV) on a global scale.
  • NHLBI released several funding opportunities to expand SCD research and programs in Africa, including (1) the BLOODSAFE program to enhance availability of safe blood for patients with severe anemia and hemorrhagic conditions in low or lower-middle income countries (LLMICs) in Sub-Saharan Africa; and (2) the new grant phase of the Sickle Pan-African Research Consortium.

Explore the full report.

State of Sickle Cell Disease 2020 Report Card: Social Media Toolkit

See the recommended social media posts below, and download the images that go along with each post.

Share via Facebook, Instagram, and LinkedIn:
Progress has been made toward improving the global state of sickle cell disease, but there is room for improvement. The State of Sickle Cell Disease 2020 Report Card ranks progress in four key areas where change must occur to improve quality of life for all individuals living with sickle cell disease. Read the report card:  https://bit.ly/3huPrk4 

#sicklecell #SickleCellDisease #SickleCellAwarenessMonth #ConquerSCD

Share via Twitter:
Progress has been made toward improving the global state of #SickleCellDisease, but there is room for improvement. The State of Sickle Cell Disease 2020 Report Card is out now! https://bit.ly/3huPrk4 #ConquerSCD #SickleCellAwarenessMonth


Access to care

Download the image.

Share via Facebook, Instagram, and LinkedIn
Progress has been made toward improving access to appropriate care for sickle cell disease in the United States, but individuals still face too many barriers to getting the comprehensive coordinated care they need. See recent progress and what we still need to do in the State of Sickle Cell Disease 2020 Report Card. https://bit.ly/3huPrk4

#sicklecell #SickleCellDisease #SickleCellAwarenessMonth #ConquerSCD

Share via Twitter
There are still too many barriers to appropriate #SickleCellDisease care in the United States. See recent progress and what we need to do in the State of Sickle Cell Disease 2020 Report Card. https://bit.ly/3huPrk4 #ConquerSCD #SickleCellAwarenessMonth

Education and Training

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Share via Facebook, Instagram, and LinkedIn
Several new efforts are underway to train U.S. health care providers in sickle cell disease, and evidence-based guidelines hold promise in helping improve care. However, more providers specialized in SCD are needed, and all specialists who care for this population must receive proper education and training. See recent progress and what we still need to do in the State of Sickle Cell Disease 2020 Report Card. https://bit.ly/3huPrk4

#sicklecell #SickleCellDisease #SickleCellAwarenessMonth #ConquerSCD

Share via Twitter
While several promising efforts are underway, we must do more to expand the base of knowledgeable professionals who can treat #SickleCellDisease. Read the State of Sickle Cell Disease 2020 Report Card https://bit.ly/3huPrk4 #ConquerSCD #SickleCellAwarenessMonth


Research & Clinical Trials

Download the image.

Share via Facebook, Instagram, and LinkedIn
Two new drugs have been approved for sickle cell disease and gene therapy is showing promise as a potential cure. Investment in research has grown and infrastructure is expanding, but it will take time to see the benefits of these new programs. Read the State of Sickle Cell Disease 2020 Report Card to see recent progress and what we still need to do: https://bit.ly/3huPrk4 

#sicklecell #SickleCellDisease #SickleCellAwarenessMonth #ConquerSCD

Share via Twitter
New #SickleCellDisease drugs have been approved and gene therapy shows promise. Research infrastructure is expanding, but further progress will take time. Read the State of Sickle Cell Disease 2020 Report Card: https://bit.ly/3huPrk4 #ConquerSCD #SickleCellAwarenessMonth


Global Issues

Download the image. Download the image.

Share via Facebook, Instagram, and LinkedIn
World leaders and local governments have made progress to improve access to sickle cell disease screening and care, particularly in sub-Saharan Africa and India where SCD is endemic, but there is more to do. Screening must be expanded, with less burden on the patient or family. Read the State of Sickle Cell Disease 2020 Report Card to see recent progress and what we still need to do: https://bit.ly/3huPrk4 

#sicklecell #SickleCellDisease #SickleCellAwarenessMonth #ConquerSCD

Share via Twitter
World leaders and local governments have made progress to improve access to #SickleCellDisease screening and care where SCD is endemic, but there is more to do. Read the State of Sickle Cell Disease 2020 Report Card: https://bit.ly/3huPrk4 #ConquerSCD #SickleCellAwarenessMonth

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Past Reports

2018

The State of Sickle Cell Disease: 2018 Report Card was created by sickle cell disease partners as a follow up to the previous report card which was released two years ago, in 2016. The 2018 Report Card is based on the feedback of more than 100 stakeholders in the SCD community and showcases a snapshot of the state of four major areas: access to care in the United States, training and professional education, research and clinical trials, and global issues. The report card indicates that initiatives like nationwide training programs for providers and recent legislation to enhance access to quality care have moved the needle in the right direction. While progress is being made, the report card also serves as a reminder that more can be done across many priority areas for individuals with SCD.

The following organizations have endorsed the report card:

  • American Academy of Emergency Medicine
  • American College of Emergency Physicians
  • American Society for Apheresis
  • American Society for Clinical Pathology
  • American Society of Gene & Cell Therapy
  • American Society of Hematology
  • American Society of Pediatric Hematology/Oncology
  • ApoPharma
  • bluebird bio
  • Cerus Corporation
  • Functional Fluidics
  • Global Blood Therapeutics, Inc.
  • International Association of Sickle Cell Nurses and Professional Associates
  • Ironwood Pharmaceuticals, Inc
  • Medunik USA
  • NMDP/Be The Match
  • Novartis Pharmaceuticals Corporation
  • Sickle Cell Aid Foundation (SCAF)
  • Sickle Cell Community Consortium
  • Sickle Cell Disease Association of America, Inc.
  • Sickle Cell Disease Association of Canada/ Association d’Anémie Falciforme du Canada  
  • Sickle Cell Outcome Research (SCORE) program, the Netherlands
  • Sickle Cell Warriors
  • STAR - Sickle Transplant Alliance for Research
  • Terumo BCT
  • Vanguard Therapeutics, Inc.

2016 

Over the past century, great advances have been made in the understanding and treatment of sickle cell disease (SCD). However, many basic scientific processes are still not fully understood, too few treatments have been developed, and most of the people who have SCD do not have access to the treatments that could improve the duration and quality of their lives.

The State of Sickle Cell Disease: 2016 Report has been created by the American Society of Hematology (ASH) based on the feedback of more than 100 thought leaders and representatives from other organizations to look at the state of SCD and identify the greatest opportunities for improvement. This report is a summary of the current state of research, access to care, and global issues, and it provides an outline of opportunities to change the status quo for people with this disease. ASH is inviting partner organizations to endorse the report and take on projects that will advance the outlined goals.

The following organizations have endorsed the report:

  • American Academy of Emergency Medicine
  • American Academy of Pediatrics
  • American College of Emergency Physicians
  • American Public Health Association
  • ApoPharma
  • American Society for Clinical Pathology
  • American Society of Pediatric Hematology/Oncology
  • Association of Public Health Laboratories
  • Emergency Department Sickle Cell Care Collaborative*
  • Emergency Nurses Association
  • Emmaus Life Sciences
  • Foundation for Sickle Cell Disease Research
  • Global Blood Therapeutics
  • Global Sickle Cell Disease Network
  • GlycoMimetics, Inc
  • International Association of Sickle Cell Disease Nurses and Physician Assistants
  • Mast Therapeutics, Inc.
  • National Marrow Donor Program
  • National Medical Association
  • Pfizer Inc.
  • Prolong Pharmaceuticals
  • Sickle Cell Adult Provider Network
  • Sickle Cell Disease Association of America
  • Sickle Cell Warriors

*The Emergency Department Sickle Cell Care Collaborative (EDSC3) endorses the State of Sickle Cell Disease: 2016 Report. The endorsement by EDSC3 does not represent or obligate in any way any of the other organizations that are represented by EDSC3 members.

Report Addendum: Priorities for Sickle Cell Disease

This is the full list of priorities for SCD that was developed from a 2015 Sickle Cell Disease Summit to provide a roadmap to move the needle forward on this disease. These domains and the long- and short-term priorities were suggested by SCD stakeholders: individuals with SCD and their families, care-givers, researchers, experts, and others.

Report Card

ASH has polled individuals with SCD, health care providers, and global health leaders to rank each area contributing to the overall state of SCD on a scale of 1 to 10. Though advances have been made, these scores show us that we have much to do to improve the state of care for those living with SCD.


State of Sickle Cell Disease 2016 Report is published by The American Society of Hematology. Copyright © 2016. No part of this publication may be reproduced without the prior consent of the publisher. All rights reserved.

ASH does not assume any responsibility for any injury and/or damage to persons or property arising from or related to any use of the material contained in this publication.

The status quo is unacceptable, and we are setting out to change it

People with sickle cell disease (SCD) are afflicted on two fronts — one by having a serious, chronic condition that inflicts pain and other complications — the other by a fragmented system of care.

Today, there are opportunities to transform this disease and the way we care for people with SCD. We are launching an international call to action on SCD by bringing together researchers, clinicians, individuals with sickle cell disease and their families, policymakers, and the private sector to focus our collective efforts and change the state of SCD around the world.

Spread the Word

The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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