Title: World Sickle Cell Awareness Day

Summary: Resolution recognizing June 19, 2023, as "World Sickle Cell Awareness Day" in Florida.

Full Text:
WHEREAS, sickle cell disease is a disease in which a person's body produces abnormally shaped red blood cells that resemble a crescent or sickle and that do not last as long as normal, round red blood cells, which leads to anemia, and WHEREAS, the sickle cells also get stuck in blood vessels and block blood flow, resulting in vaso-occlusive crises, which can cause pain and organ damage, and WHEREAS, one common type of sickle cell disease is sickle cell anemia, in which in dividuals with the disease are born with two sickle cell genes, each inherited from one parent, and WHEREAS, an individual with only one sickle cell gene has a "sickle cell trait," which occurs in about out of every 18 African Americans and out of eve ry Hispanic Americans, and WHEREAS, the United States Centers for Disease Control and Prevention estimates that sickle cell disease affects approximately 100,000 Americans, and occurs among about in every Black or African-American births and out of every 16,300 Hispanic-American births, and WHEREAS, more than 8,000 Floridians have sickle cell disease, and WHEREAS, the National Institutes of Health is working on innovative genetic therapies that could someday cure sickle cell disease, and WHEREAS, the United States Food and Drug Administration has granted orphan drug designation to sickle cell therapies a designation that provides incentives and encourages the development of therapies for rare diseases, and WHEREAS, sickle cell disease is a chronic condition that can affect any organ, including the kidneys, lungs, and spleen, and research indicates that patients experience many severe complications, including stroke, infections, and pulmonary embolism, and have a shorter life expectancy than the general population, and WHEREAS, vaso-occlusive crises are a common, painful complication of sickle cell disease in adolescents and adults which may occur several times a year; and these recurrent episodes induce severe pain, decrease quality of life, cause life-threatening complications such as stroke, and are associated with increased mortality, and WHEREAS, vaso-occlusive crises can cause intense pain that lasts anywhere from a few hours to a few weeks,and WHEREAS, sickle cell disease can be a lif e-threatening condition leading to a to-year reduction in life expectancy, and WHEREAS, individuals living with sickle cell disease encounter barriers to obtaining quality care and improving their quality of life, and these barriers include limitati ons in geographic access to comprehensive care, the varied use of effective treatments, lack of insurance, and the limited number of health care providers with knowledge and experience to manage and treat sickle cell disease, and WHEREAS, while there is no widely available cure for sickle cell disease, one-time gene therapies, including gene editing therapeutic approaches, are being developed and may offer potential cures for some patients, and WHEREAS, curative therapies for sickle cell disease may offer substantial savings over the patient's lifetime by avoiding the cost of future health services, NOW, THEREFORE, Be It Resolved by the House of Representatives of the State of Florida: That June 19, 2023, is recognized as "World Sickle Cell Awareness Day" in Florida.