[Congressional Record (Bound Edition), Volume 159 (2013), Part 10]
[Extensions of Remarks]
[Page 15023]
[From the U.S. 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.

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