(WASHINGTON, September 6, 2016) — Today, AABB 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.
“AABB members, working in hospitals and health care facilities throughout the world, see thousands of patients with sickle cell disease each year, as many are treated with regular blood transfusions. This disease and the current standard of care take a terrible toll, and patients are likely to face complications even if they do everything right,” said Ross M. Fasano, MD, Assistant Professor of Pathology and Laboratory Medicine at Emory University. “We are committed to improving peoples’ lives, and improving outcomes for patients with this deadly disease.”
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 globallyi. 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.
Today, at a press conference and formal launch of the Coalition at the Knight Conference Center of the Newseum in Washington, D.C., the Coalition will announce a call to action on SCD.
“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.”
AABB is an international, not-for-profit association representing individuals and institutions involved in the fields of transfusion medicine and cellular therapies. The association is committed to improving health through the development and delivery of standards, accreditation and educational programs that focus on optimizing patient and donor care and safety. AABB membership includes physicians, nurses, scientists, researchers, administrators, medical technologists and other health care providers. AABB members are located in more than 80 countries and AABB accredits institutions in over 50 countries.
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.
iFrederic B. Piel, Simon I. Hay, Sunetra Gupta, David J. Weatherall and Thomas N. Williams, “Global Burden of Sickle Cell Anaemia in Children under Five, 2010-2050: Modelling Based on Demographics, Excess Mortality, and Interventions,” PLOS 10, no. 7 (July 2013): e1001484.