WHEREAS, Sickle cell disease is a severe, life-shortening inherited disease that affects the red blood cells and impacts predominantly people of color, especially African Americans; 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, 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; and in one recent study more than 30 percent of those diagnosed experienced premature death, and another recent study estimates that the life expectancy for individuals with sickle cell disease is 54 years of age; 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 life-threatening disease burden; and

WHEREAS, Individuals living with sickle cell disease encounter barriers to obtaining quality care and improving their quality of life. These barriers include 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 crisis 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 that treatment may result in fertility issues; and

WHEREAS, The vast majority of states do not currently provide fertility preservation programs for Medicaid beneficiaries, including those living with sickle cell disease who receive curative therapies that 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 moneys or licensed by the state to encourage the advancement or adoption of policies to improve care, outcomes, and cost effectiveness; and

WHEREAS, The National Organization of Black Elected Legislative Women (NOBEL Women) represents communities and states across the country most affected by sickle cell disease; now, therefore, be it