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Improving the Lives of People with Sickle Cell Disease

Tuesday, November 15, 2016, at 1 pm EST

a little girl with a doctor

Sickle cell disease (SCD) describes a group of inherited disorders that can cause red blood cells to develop in an abnormal rigid sickle or crescent shape. These inflexible sickle-shaped cells can stick to the walls of blood vessels and block the flow of blood completely, leading to a lack of oxygen in surrounding tissues. In addition to sudden, excruciating pain events known as pain crises, SCD can lead to strokes, organ damage, joint and bone problems, and other severe health consequences. The effects of SCD begin around 5 or 6 months of age and continue over a person’s lifetime. There is no national registry for SCD, but experts estimate that this disease affects approximately 100,000 people in the United States alone.

Over the past 30 years, treatments for SCD and its complications have improved average life expectancy, but these treatments can be costly and invasive. Additionally, healthcare needs and access to care may change over the course of a patient’s life. Through continued collaboration with clinicians, researchers and the SCD community, we can identify critical gaps and better understand how these treatments can improve the lives of people with SCD.

This session of Public Health Grand Rounds discusses SCD, what we know, and how far we have come in just a few decades.


Beyond the Data – Improving the Lives of People with Sickle Cell Disease

In this session of Beyond the Data, Dr. Phoebe Thorpe and Dr. Kathryn Hassell discuss sickle cell disease, what it is, and how far care, treatment, and patient outcomes have come in the last 40 years.

Presented By:

Mary Hulihan, DrPH
Health Scientist, Epidemiology and Surveillance Branch
Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities, CDC
“Using Data to Understand Gaps in Care and Outcomes”

Kim Smith-Whitley, MD
Medical Director, Sickle Cell Clinical Program
Children’s Hospital of Philadelphia
Chief Medical Officer (Immediate Past)
Sickle Cell Association of America
“The Sickle Cell Community and Pediatric Care”

Kathryn Hassell, MD
Professor of Medicine, Division of Hematology
University of Colorado Denver
“Improving Outcomes for Adults with Sickle Cell Disease”

Jean Raphael, MD, MPH
Associate Professor, Pediatrics
Baylor College of Medicine
Director, Center for Child Health Policy and Advocacy
Texas Children’s Hospital
“A Health Policy Approach to Sickle Cell Disease”

Facilitated By:

John Iskander, MD, MPH, Scientific Director, Public Health Grand Rounds

Phoebe Thorpe, MD, MPH, Deputy Scientific Director, Public Health Grand Rounds

Susan Laird, MSN, RN, Communications Director, Public Health Grand Rounds

  • Page last reviewed: November 2, 2016
  • Page last updated: November 2, 2016
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