Congress has designated September as National Sickle Cell Awareness Month to help focus attention on the need for research and treatment of sickle cell disease, an inherited disease condition that currently affects 70,000-100,000 Americans. Sickle cell disease occurs when hemoglobin, a protein carried by the body's red blood cells that attaches to oxygen in the lungs and transports it to all parts of the body, is abnormal, causing the red blood cells to take on a rigid "C" or sickle, shape. Sickle cells can get stuck and block blood flow, causing pain and infections. Complications of sickle cell disease are a result of sickle cells blocking blood flow to specific organs, and include stroke, acute chest syndrome (a condition that lowers the level of oxygen in the blood), organ damage, and blindness. Beyond sickle cell disease, in which patients have two sickle cell genes, individuals can also have only one defective hemoglobin production gene and carry what is known as sickle cell trait. Individuals with sickle cell trait typically live normal lives, however, extreme conditions such as severe dehydration and high-intensity physical activity can lead to serious rare health issues, including sudden death.
As the nation and the world focus on increasing awareness of this disease this month, ASH continues its commitment to working with Congress, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other federal agencies to increase research, treatment options, and access to care for patients with sickle cell disease and sickle cell trait.
The Society recently submitted comments to The National Heart, Lung, and Blood Institute (NHLBI) regarding its draft Expert Panel Report on the Management of Sickle Cell Disease. The goal of the guidelines is to help people living with sickle cell disease receive appropriate care by supporting health care professionals who provide their care. Earlier this year ASH also issued its latest Agenda for Hematology Research which included sickle cell disease as one of the most promising areas of hematology research requiring ongoing funding support. The ASH Research Agenda specifically cited that future sickle cell disease research would be most critical to initiatives that aim to reduce barriers to care, burden of pain, end-organ injury, and premature death in sickle cell patients. The strategic plan further recommended the development of advanced, highly targeted approaches to discovery and implementation of new interventions that will improve care and quality of life for Americans living with sickle cell disease.
ASH has also developed a sickle cell working group to help identify ways the Society can support federal programs and enhance the Society's advocacy efforts to improve research and treatment. Most recently this group worked to develop and release a policy statement in January 2012 opposing screening for sickle cell trait as a prerequisite for participation in athletics. This policy statement directly contrasted a policy enacted in 2010 by the National Collegiate Athletic Association (NCAA) requiring all Division I institutions to perform sickle cell testing for all incoming student athletes and instead urged athletics programs to adopt universal preventive interventions in their training programs to prevent exertion-related illness and death for all athletes. Since the release of the policy statement, ASH has been involved in several ongoing efforts to educate policy-makers, physicians, and the public about sickle cell trait, and to urge the NCAA to rescind its current policy. The Society has also been leading the charge to encourage increased research on sickle cell trait and other conditions as they relate to exertion-related illness.
To learn more about federal sickle cell research opportunities, programs, and resources, visit the National, Heart, Lung and Blood Institute (NHLBI) website and the CDC website.
ASH is also committed to supporting practitioners who care for those with sickle cell disease, hosting several webinars about complications of sickle cell disease over the past year.
In addition to its strategic partnerships with Congress, NIH, CDC, and other federal agencies to combat sickle cell disease, ASH offers a host of information and multimedia on its sickle cell patient resource page, including a video chronicling a real patient’s journey with sickle cell anemia. Access this page to find general information about sickle cell risk factors, signs and symptoms, treatment options, and links to organizations that inform and support sickle cell patients and their families.
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