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House Co-Sponsorship Memoranda
House of Representatives
Session of 2013 - 2014
Regular Session
MEMORANDUM
| Posted: | October 20, 2014 01:27 PM |
|---|---|
| From: | Representative Vanessa Lowery Brown and Rep. Stephen Kinsey |
| To: | All House members |
| Subject: | Urging the President of the United States to Declare Sickle Cell Disease as a National Health Priority and Encouraging Congress to Reauthorize the Sickle Cell Disease Prevention and Treatment Demonstration Program |
| During the next legislative session, we intend to introduce a resolution urging the President of the United States to declare sickle cell disease as a national health priority and encouraging Congress to reauthorize the Sickle Cell Disease Prevention and Treatment Demonstration Program. Sickle cell disease is a genetic blood disorder that affects approximately 70,000 to 100,000 Americans, the majority of whom are African American or Hispanic. People who have sickle cell disease inherit two copies of the sickle globin gene – one from each parent. The gene codes for production of abnormal hemoglobin and affected individuals produce abnormal red blood cells that become distorted and shaped like crescents or sickles when they lose oxygen. These cells become sticky and can block blood vessels, leading to organ damage and severe episodes of joint pain, bone infections, pneumonia, and vision problems. The disease occurs in approximately 1 out of every 500 African American births and 1 out of every 36,000 Hispanic American births. Furthermore, about 2.5 million United States citizens have sickle cell trait, which occurs when a person inherits one copy of the globin gene. When both parents have sickle cell trait, each of their children has a 1 in 4 chance of having sickle cell disease. Today, a blood screening test to detect sickle cell disease is performed on newborns in all 50 states. Additionally, the Food and Drug Administration approved the drug hydroxyurea in the 1990s to treat adults with sickle cell disease. Despite these great strides, many of the medical benefits are not reaching enough individuals. Many who could benefit from hydroxyurea are not prescribed the drug. More research needs to be conducted on sickle cell disease to discover additional forms of treatment and medication. By declaring sickle cell disease as a national health priority, the President can direct necessary resources toward awareness efforts for this disease that affects so many Americans. Additionally, the reauthorization of the Sickle Cell Disease Prevention and Treatment Demonstration Program will allow for further research into potential life-saving treatments, such as bone marrow and stem-cell transplant procedures, that could dramatically improve the lives of individuals affected with sickle cell disease. Please join us in urging the President to declare sickle cell disease as a national health priority and encouraging Congress to reauthorize the Sickle Cell Disease Prevention and Treatment Demonstration Program. Should you have any questions or concerns regarding this measure, please feel free to contact either of our Harrisburg offices. |