WHEREAS, Sickle cell disease is a severe, life-shortening inherited disease that affects the red blood cells and impacts predominantly people of color. It is especially common in Africans and African-Americans, but the disease can also be found in other demographics, primarily in South and Central America, the Caribbean, Middle Eastern and Mediterranean countries, and India; and

WHEREAS, Although the federal Centers for Disease Control and Prevention estimates that sickle cell disease affects more than 100,000 people in the United States, the exact number of people with sickle cell disease is unknown. Comprehensive and coordinated data collection efforts are needed to better understand and quantify the scope and impact of sickle cell disease on patients, communities, states, and the nation; and

WHEREAS, Approximately 1 in 12 African-Americans are diagnosed with the trait and are carriers for sickle cell disease; and

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. 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, Individuals living with sickle cell disease experience severe pain, anemia, organ failure, stroke, and infection; in one recent study more than 30 percent of those diagnosed experienced premature death. Another recent study estimates that the life expectancy for individuals with sickle cell disease is 54 years; and

WHEREAS, The symptoms of sickle cell disease begin to show within the very first year of a person’s life if they have the disease and the pain ranges from mild to very severe; and

WHEREAS, More than 40 percent of sickle cell disease patients are covered by Medicaid; and

WHEREAS, In the more than 100 years since the underlying cause of sickle cell disease was discovered, the sickle cell patient community has received relatively little attention and few resources. For decades, these individuals have suffered due to racial discrimination in the health care system, in addition to the life-threatening disease burden; and

WHEREAS, Individuals living with sickle cell disease encounter barriers to obtaining quality care and improving their quality of life, including limitations in geographic access to comprehensive care, the varied use of effective treatments, the discrimination of being labeled “drug seekers” when seeking care during a crisis, the high reliance on emergency care, and the limited number of health care providers with knowledge and experience to manage and treat sickle cell disease; and

WHEREAS, Evidence-based clinical guidelines developed by the American Society of Hematology and the American College of Emergency Physicians recommend that individuals with sickle cell disease who present in the emergency room with a sickle cell crises be triaged and administered appropriate pain medications within 60 minutes; and

WHEREAS, Individuals living with sickle cell disease and their caregivers often report having to wait in emergency rooms for hours while experiencing severe pain crises, and receiving substandard care prior to discharge; and

WHEREAS, Many facilities do not have adequate clinical pathways and treatment protocols based on evidence based clinical guidelines pertaining to management of sickle cell disease patients, particularly those experiencing pain crises; and

WHEREAS, There is currently one curative therapy option for a limited number of individuals living with sickle cell disease, which is a bone marrow transplant from a matched donor, but the treatment may result in fertility issues; and

WHEREAS, State governments have tools at their disposal to incentivize or require health care providers, facilities, and entities receiving state money or licensed by the state to encourage the advancement or adoption of policies to improve care, outcomes, and cost effectiveness; and

WHEREAS, It is imperative that there be greater awareness of this serious health condition, and more must be done to increase activity at the local, state, and national levels; now, therefore, be it