SCD Advocacy Talking Points!

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2 What is Sickle Cell Disease? Sickle cell disease refers to a group of genetic disorders of hemoglobin, a protein in red blood cells that carry oxygen. The conditions cause a change in hemoglobin A that create hemoglobin S. "Sickle cell anemia" refers to the condition where both hemoglobins are S (hemoglobin SS). Sickle cell disease refers to hemoglobin S in combination with another type of hemoglobin, such as C, D or E. The most common sickle combinations are: hemoglobin SS, SC, and S beta zero or S beta plus thalassemia. Common symptoms associated with sickle cell disease include: Pain; acute chest syndrome; pulmonary hypertension; increased susceptibility to infection; protein in the urine; priapism; gall stones; bone disease; skin ulcers; severe anemia; problems with the spleen (splenic sequestration); brain injury; and problems with the eyes (retinopathy). The prevalence of hemoglobin S is high in the African American population, 1:14; the prevalence of sickle cell disease of all kinds is about 1:35 African Americans. The prevalence of hemoglobin S in the Hispanic population is less, about 1:1; the prevalence of the disease in this population is not known. The sickle mutation occurs in people from Africa, the Mediterranean, India, and other regions. Sickle cell trait occurs in Caucasians as well; in this group symptoms can be more severe than in other groups. It is believed that there are 1, people with sickle cell disease in the United States. Sickle Cell Facts: The sickle gene affects the red blood cells Sickle cell trait IS NOT sickle cell disease, and will NOT turn into sickle cell disease A person with sickle cell trait inherited one gene for regular hemoglobin (A) from one parent and one gene for sickle hemoglobin (S) from the other A person with sickle cell disease inherited a gene FROM EACH PARENT that caused the disease 2 of 5

3 Sickle Cell Disease in California Facts for the Public There were approximately 5,1 people with SCD living in California in 24-28: 14% younger than 6 years 25% 6-17 years 22% years 28% 3-5 years What is Sickle Cell Disease (SCD)? SCD is a group of inherited conditions that affect hemoglobin, a protein that allows red blood cells (RBC) to carry oxygen to all parts of the body. Healthy RBC are round, and they move through small blood vessels to carry oxygen to all parts of the body. In SCD, the RBC become hard and sticky and look like a C-shaped farm tool called a sickle. These cells can get stuck in the blood vessels and block the normal flow of oxygen throughout the body. This leads to a variety of health problems. 11% 51 years and older There were 486 babies born with SCD in California in 24-28: 89% were Black, African-American 8% were Hispanic, Hispanic-American 5% were Other Note: There is overlap between the race and ethnicity categories Alameda 32 Number of Newborns with SCD, SCD affects all races and ethnic groups. In California, SCD occurs among approximately 1 out of every 5,644 live births 452 Black, African- American, live births Kern 31 Los Angeles 166 Orange 45 San Bernardino 82 35,454 Hispanic- American, live births CS244357_A November 213 National Center on Birth Defects and Developmental Disabilities Division of Blood Disorders 3 of 5

4 Average # per person per year Healthcare utilization by people with SCD, Emergency Room Visits Hospital Admissions % of people with SCD Most common complications and comorbidities among people with SCD on Medi-Cal, 24-28* Pneumonia/ACS Asthma Gallbladder Disease Renal Failure Avascular Necrosis.5 1 < The number of hospital admissions and emergency room visits rises dramatically after age 18 < Pneumonia/Acute Chest Syndrome (ACS) was the most common complication across all ages Total number of hospital days for people with SCD, Age at death for people with SCD, days 1-1 days 11-2 days 21-3 days 31+ days -1 years 4% 11-2 years % of people with SCD years 2% >6 years 14% 6% 21-3 years 15% years 24% 31-4 years 17% < Over 6% of people with SCD, age 6 and older, spent at least 1 day in the hospital during the 5 years Over 4% of deaths in people with SCD during the five years were 4 years old and younger *Definitions Asthma: A disorder that causes the airways of the lungs to swell. Symptoms include wheezing, shortness of breath, chest tightness, and coughing. Avascular Necrosis: Reduced blood supply causes death of bone cells, most often in the hip and shoulder. Gallbladder Disease: Gall stones are a common complication of SCD, beginning in children as young as toddlers. Pneumonia and/or Acute Chest Syndrome: Pneumonia is lung infection caused by an infectious pathogen (virus or bacteria) that can be life-threatening in people with sickle cell disease. Acute chest syndrome is similar to pneumonia, with different diagnostic criteria. Renal Failure: Includes significant forms of kidney disease, whether acute or chronic. These data were collected through the Registry and Surveillance System for Hemoglobinopathies (RuSH). RuSH was a pilot project that was implemented by the Centers for Disease Control and Prevention (CDC) in collaboration with the National Institutes for Health (NIH), National Heart, Lung, and Blood Institute (NHLBI). 4 of 5 For more information, please visit and Like us on Facebook at California Sickle Cell Resources November 213

5 SCD Advocacy Directory Carolyn Rowley, PhD Cayenne Wellness Center and Children s Foundation Craig Hutchinson, MPH PHRESH Project and Public Health Institute Deborah Green Sickle Cell Disease Foundation of California Eileen Murray Children s Hospital & Research Center Oakland Fred McFadden Blood Centers of the Pacific Helen Mitchell Northern California Sickle Cell Community Advisory Council Marsha Treadwell, PhD Children s Hospital & Research Center Oakland Mary Brown Sickle Cell Disease Foundation of California, Board Member & President Nancy Rene Sickle Cell Disease Foundation of California, Board Member Rogelio Medina PHRESH Project and Children s Hospital & Research Center Oakland Susan Jackson-Byrd - Northern California Sickle Cell Community Advisory Council Wanda Williams Northern California Sickle Cell Community Advisory Council **Please direct any questions regarding the California Sickle Cell Advocacy Project to Rogelio Medina at (51) or info@casicklecell.org. SCD Advocacy 2/1/14 5 of 5