I am very pleased to announce that the House today passed, under unanimous consent, S2465 the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2018 which renews previous legislation which I helped to lead.
On April 11, 2003 I, along with Representatives Richard Burr, John Shimkus and Bobby Rush introduced H.R. 736, the Sickle Cell Treatment Act of 2003. This bi-partisan legislation wasgreatly needed because more than two million Americans, mostly of African descent, have the Sickle Cell trait and more than 70,000 have Sickle Cell Disease (SCD). Every year 130 additional Illinois children are diagnosed with SCD. The bill was incorporated into the American Jobs Creation Act of 2004 as Section 712(c) I introduced the renewal last year along with Dr. Burgess the chief Republican sponsor and advocate.
Sickle cell disease is an inherited blood disorder characterized by affected red blood cells that mutate into the shape of a crescent or sickle, and as such these cells are unable to pass through small blood vessels. It is a recessive genetic condition that occurs when a child inherits two sickle cell genes- or traits- from each parent.
The consequences and complications of this disease are extreme. According to the Sickle Cell Disease Association of America, Inc., whom we have worked with for many years on this legislation, have studied and reported that common complications with this disease include early childhood death from infection, stroke in young children and adults, lung problems similar to pneumonia, chronic damage to organs including the kidney, leading to kidney failure, and to the lungs causing pulmonary hypertension, and severe painful episodes. In fact pain episodes are a hallmark of sickle cell disease. They are unpredictable in many ways, both the timing of when they occur, how severe they will be and how long they will last. For those with the disease, these devastating pain episodes can start as early as six months of age and can span a lifetime, impacting school attendance and participation in the workforce. In fact, these pain crises contribute significantly to the 200,000 emergency room visits collectively made by sufferers of sickle cell disease each year in our country. A typical crisis will result in a hospital stay of seven to ten days.
More than 2.5 million Americans have the sickle cell trait. The sickle cell trait is found in 1 of 12 African Americans. There is a 1 in 4 chance that a child born to parents who both have the Sickle Cell Trait will develop the sickle cell disease. The average life span for an adult with the sickle cell disease is 45 years. The Sickle cell disease affects an estimated 100,000 Americans, primarily African Americans and Hispanics, and other ethnic groups.
The renewal will "continue efforts, including by awarding grants, to develop or establish mechanisms to improve the treatment of sickle cell disease, and to improve the prevention and treatment of complications of sickle cell disease, in populations with a high proportion of individuals with sickle cell disease” and will provide funding for 2019-2023.
Regular health maintenance is critical for people with sickle cell anemia. Proper nutrition, good hygiene, bed rest, protection against infections, and avoidance of other stresses all are important in maintaining good health and preventing complications. Regular visits to a physician or clinic that provides comprehensive care are necessary to identify early changes in the patient's health and ensure that the person receives immediate treatment.
With good health care, many people with sickle cell anemia are in reasonably good health much of the time and living productive lives. The life expectancy of people with sickle cell anemia has increased over the past thirty years. With research, education and treatment we can continue to improve the quality of life and the life expectancy for people with sickle cell.