State of Sickle Cell Disease Improving, But Further Progress Needed
Two-year check-in highlights progress, opportunities for improvement
(WASHINGTON, September 20, 2018) — The American Society of Hematology (ASH) today joined 24 organizations to publish a report card on the state of sickle cell disease (SCD) in 2018. Created with input from individuals with SCD, health care providers, and global health leaders, this snapshot of the state of SCD suggests that progress has been made since ASH and other SCD partner groups issued a 2016 call to action to change the status quo for people with SCD. However, there is still more that must be done to improve care for people with this chronic, life-threatening disease.
“People with SCD face extreme pain, disability, limited treatment options, a lack of knowledgeable care providers, and few curative options,” said ASH President Alexis A. Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago. “ASH has committed to changing that narrative, and this report card tells us that we as a community are making a real, positive difference.”
In 2016, ASH worked with SCD stakeholders to identify four priority areas of opportunity: access to care in the United States, provider training and education, research and clinical trials, and global health. The Society and partners then released a report examining the state of SCD and proposed goals for improvement in each of these four areas. A corresponding report card evaluated the state of SCD in each priority area. ASH and partners committed to reporting on progress every two years.
To develop the 2018 report card, ASH polled more than 100 stakeholders in the SCD community and asked them to rate the state of SCD in each of the four established priority areas. The results of the poll indicate 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. Progress was most evident in the research and clinical trials category, where advancements in new technologies like gene therapy and genome editing have fostered hope for more curative options.
While progress is being made, the report card also serves as a reminder that more can be done across many priority areas for people with SCD, especially to reduce the global burden of SCD, which remains a major cause of infant mortality in the developing world.
“Having such frank, honest feedback from the stakeholder community keeps us focused on the ultimate goal of conquering SCD,” said Dr. Thompson. “It reminds us that the amazing improvements we have seen over the last two years are not the end of the story, and that there is still so much more that we can do.”
In 2016, when ASH and partners published the initial report, the Sickle Cell Disease Coalition was launched to amplify the voice of the SCD stakeholder community and improve outcomes for individuals with SCD. The continued work of the Coalition and its member organizations have contributed to much of the progress reported today.
ASH has committed to a multifaceted initiative to improve the state of SCD. In June, ASH and the Coalition released a short documentary and public service announcement focused on awareness of SCD and the need for increased newborn screening in the developing world. ASH also continues to advocate for policies that will expand care access in the United States — including renewed data collection programs, Medicaid access legislation, and improved biomedical research funding — and is in the process of creating new clinical practice guidelines for SCD, which will be published in 2019. ASH has also announced plans to launch a clinical trials network for SCD. Furthermore, the Society is committed to enhancing SCD research through the establishment of a research registry, clinical trials network, and SCD Clinical Endpoints Workshop in partnership with the U.S. Food and Drug Administration.
To view the 2018 Report Card on the State of Sickle Cell Disease, visit www.scdcoalition.org/report.
The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 50 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly in print and online. In 2016, ASH launched Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.
Stephen Fitzmaurice, American Society of Hematology