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
- 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.
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.