State Of Sickle Cell Disease 2016 Report: “This Status Quo Is Unacceptable”
Sickle cell disease (SCD) is an inherited, lifelong chronic disorder affecting nearly 100,000 Americans and a growing global health problem that will touch nearly 30 percent more people globally in the next three decades. Though new approaches to managing SCD have led to improvements in diagnosis and supportive care, people living with the disease still have severe complications to overcome. Many are unable to access quality care and are limited by a lack of effective treatment options.
In an effort to identify unmet medical needs for people with SCD, the American Society of Hematology (ASH), along with other groups, issued the State of Sickle Cell Disease: 2016 Report, evaluating the disease in four priority areas — access to care, training and professional education, research and clinical trials, and global health. The report shows that significant improvements are needed across all areas and that, though patients are living longer, the system of care needs to change to ensure a better quality of life. To address these challenges, ASH launched the Sickle Cell Disease Coalition along with more than 20 other organizations who are issuing a call to action that will amplify the voice of the SCD community, promote SCD awareness, and transform SCD care both in the United States and around the globe.
“Not only are individuals with SCD burdened by the pain and disability that comes with a chronic condition, but they also have very few accessible treatment options due to our fragmented health care system,” said ASH President Charles S. Abrams, MD, of the University of Pennsylvania. “This status quo is unacceptable, and we are setting out to change it. ASH is proud to make a difference for people battling this disease worldwide by teaming up with partners from around the globe to launch the Sickle Cell Disease Coalition.”
ASH will host a press conference today in Washington, D.C., to discuss the findings of the report and issue the Coalition’s global call to action on SCD. These efforts are supported by leading patient advocacy groups, people with SCD and their families, researchers, clinicians, policymakers, industry stakeholders, and foundations. Together, these groups are pledging their collective efforts to improve care, early diagnosis, treatment, and research.