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September 12, 2016

Sickle Cell Disease Coalition launches a call to action on disease that has been neglected for far too long

(WASHINGTON, September 12, 2016) — Today, FSCDR joins other leading patient advocacy groups, researchers, clinicians, policymakers, industry, and foundations in a collective effort to improve sickle cell disease (SCD) care, early diagnosis, treatment, and research, both in the United States and globally. The newly formed Sickle Cell Disease Coalition’s first order of business is an international call to action to change the status quo of SCD.

SCD is an inherited, lifelong disorder characterized by red blood cells that become rigid and sickle-shaped, which causes them to stick together and block the flow of oxygen to the body, leading to intense pain and other serious issues such as stroke, organ failure, and even death. SCD affects nearly 100,000 Americans. It is a growing global health problem, and it is estimated that by 2050 the number of people with SCD will increase by 30 percent globally[i]. Over the last century, several important discoveries have led to improved diagnosis and treatments, but people with this disease still have severe complications and shorter life expectancy. Many are unable to access the care they need, and they live with pain and disability due to a lack of effective treatment options.

Tuesday, at a press conference and formal launch of the Coalition at the Knight Conference Center of the Newseum in Washington, D.C., the Coalition announced a call to action on SCD.  The American Society of Hematology and several members of the Coalition issued the State of Sickle Cell Disease: 2016 Report, which outlines unmet needs in four priority areas: Access to care, training and professional education, research and clinical trials, and global health. The Report not only illustrates that significant improvements are needed across all areas, it also highlights strategies for change.

“Around the world, people with sickle cell disease face unique challenges. In countries without early screening programs, patients are at risk for early death and childhood stroke.  Due to the lack of access to appropriate care in the United States, people with sickle cell disease still face a lifetime of mental and physical disability.  We can no longer accept that this is the status quo,” said Charles S. Abrams, MD, President of the American Society of Hematology, the organization spearheading the Coalition. “The Sickle Cell Disease Coalition is bringing together a number of groups that care about this disease and are committed to harness opportunities to effectuate change.”

The State of Sickle Cell Disease: 2016 Report includes several goals to help improve the state of SCD treatment and care. These goals include:

  • Shifting from acute care of complications to a chronic care model that focuses on prevention of crises, early identification, and intervention for common complications;
  • Increasing the availability of providers with SCD expertise through trainings of primary care providers and hematologists;
  • Linking research and care more closely through robust clinical research involving a wide range of partners to find new therapies, recruit more individuals with SCD, and achieve clear outcomes faster;
  • And designing, testing and implementing sustainable care and pain management approaches in countries with limited resources.

FSCDR is uniting with other organizations in the Coalition to address these areas of need.   In particular, FSCDR continues to support innovative research and implement effective treatment plans for sickle cell patients.

The Coalition will provide a unique platform to encourage stakeholders to work together to develop and implement important projects and activities that will ultimately help the SCD community, and improve outcomes for individuals with this disease. For more information on the Coalition and its mission, visit www.scdcoalition.org.

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About Foundation for Sickle Cell Disease Research

The Foundation for Sickle Cell Disease Research is a nonprofit organization in Hollywood, Florida, committed to supporting innovative research and improving the lives of patients with sickle cell. FSCDR collects data for scientific assessments of medical outcomes, completed through analyzing our patient registry and participating in clinical trials. In 2015, FSCDR opened the Sickle Cell Care and Research Network, where patients can receive outpatient care from a primary doctor, Monday through Friday, 9 a.m. to 5:30 p.m.

About the Sickle Cell Disease Coalition

The mission of the Sickle Cell Disease Coalition (SCDC) (www.scdcoalition.org) is to help amplify the voice of the SCD community, promote awareness, and improve outcomes for individuals with SCD. The Coalition is focused on promoting research, clinical care, education, training, and advocacy as well as providing a platform to encourage stakeholders to work together to develop and implement important projects and activities that will ultimately help the SCD community and improve outcomes for individuals with this disease. The Coalition is comprised of leading patient advocacy groups, people with SCD and their families, researchers, clinicians, policymakers, industry, and foundations with an interest in SCD.