Unwarranted Stigma in Sickle Cell Disease
U.S. Rep. Charles B. Rangel
The Honorable Charles B. Rangel is serving his 22nd term as the Representative from the 13th Congressional District, which stretches from upper Manhattan to northwest Bronx. A founding member of the Congressional Black Caucus, he made history as the first African American member of Congress to lead the powerful House Ways and Means Committee. He is a member of the Joint Committee on Taxation.
Congress 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 that 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 a 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 to 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 suffers.
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. The lifelong challenges of managing this chronic illness while trying to access and navigate the health care system can affect all aspects of their lives including physiological, psychological, and social well-being.
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 concerns. That is why we are optimistic that Congress will 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 and provide funding for treatment, new drugs and training and expand the development of transition services for adolescents to adult health care. It will also authorize the Centers for Disease Control (CDC) to continue and establish a Surveillance System Program and public health initiatives.
As we consider our strategy towards improving care and treatment for Sickle Cell patients, we must consider the long-term costs of stigma and other psychosocial issues. We must continue to educate ourselves, heath 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.
Finally, as friends and family members of those with Sickle Cell Disease, we must encourage our elected officials to support the reauthorization of the Sickle Cell Disease Treatment Act of 2013.
This op-ed was written by Congressman Charles B. Rangel and Sonja L. Banks, President and Chief Operating Officer of the Sickle Cell Disease Association of America.