[Congressional Record Volume 159, Number 134 (Wednesday, October 2, 2013)] [Extensions of Remarks] [Page E1418] From the Congressional Record Online through the Government Publishing Office [www.gpo.gov] RECOGNIZING UNWARRANTED STIGMA IN SICKLE CELL DISEASE ______ HON. CHARLES B. RANGEL of new york in the house of representatives Wednesday, October 2, 2013 Mr. RANGEL. Mr. Speaker, Congress has designated September as National Sickle Cell Disease Awareness Month to help focus attention on the need for research and treatment of sickle cell disease. Sickle Cell Disease is an inherited condition which affects an estimated 100,000 individuals in the United States and millions globally. While the disease is most common among African Americans, it also occurs in people of Hispanic, Indian, Caribbean, Mediterranean, Middle Eastern, and South Asian descent. Sickle cell anemia is the most common form of sickle cell disease (SCD). SCD is a serious disorder in which the body makes sickle-shaped red blood cells. ``Sickle-shaped'' means that the red blood cells are shaped like a crescent. They tend to block blood flow in the blood vessels of the limbs and organs which can cause pain and organ damage. Tissue that does not receive normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease. Creating more awareness and education about this disease remains a challenge of changing attitudes and dispelling myths about both the disease and about those who suffer from it. While those suffering from Sickle Cell are living longer, they continue to endure stigma and other psychosocial issues, including stress, that continue to be associated with the disease. Much of the stigma is based on myths and misinformation. Imagine going to a hospital ER and hearing the term ``frequent flyer'' or ``drug seeker'' to describe someone who has had to return to the ER often for a Sickle Cell Crisis? Imagine being labeled a ``drug addict'' and being looked at as a common narcotic drug seeker because you require excess doses of narcotics as a form of treatment for crisis pain? Imagine being told, ``You should be used to this pain by now!'' These are just a sampling of stories shared by sickle cell disease sufferers. Persons with Sickle Cell Disease may face this stigma throughout their lives but especially immediately after transitioning from pediatric to adult care when coordination of health care services are limited or non-existent for this population. One way our Nation can make progress in addressing the issue of stigma and other issues related to Sickle Cell Disease is to identify the areas where we can move forward quickly while debating the broader areas of concern. That is why I urge Congress to reauthorize the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2013 (SCTA). The reauthorization of this bill will highlight the need to increase awareness and understanding of this disease, promote education and research, provide funding for treatment, new drugs and expand the development of transition services for adolescents to adult health care. As we consider our strategy toward improving care and treatment for Sickle Cell patients, I believe we must consider the long-term costs of stigma and other psychosocial issues. I applaud Sonja L. Banks, President and Chief Operating Officer of the Sickle Cell Disease Association of America, and the members of the organization for their efforts to promote awareness of this important issue. We must continue to educate ourselves, health care providers, school health nurses, and the business community about the specific and broad aspects of this crippling and chronic disease and advocate for new discoveries, advancements and breakthroughs for Sickle Cell, the most common and oldest inherited blood disorder. ____________________