About 100,000 people in the United States have sickle cell disease, with most of the patient population derived from communities of African descent. While life expectancy for almost every major disease or chronic condition is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.
Gene editing offers the potential to find therapies for life-threatening and/or debilitating human genetic diseases – from cardiac and metabolic diseases, to neurological diseases such as Huntington’s disease, to sickle cell anemia. Yet human gene editing raises many questions related to bioethics and equity.
This session centers on the intersection of scientific research and public policy to eliminate health disparities, we will seek to answer:
- Why we are moving in the wrong direction in terms of life expectancy?
- What are the barriers to care?
- Who can access these therapies?
- How is personal choice given a fair voice?
- Is gene therapy a viable cure and who funds a cure?
Panelists will answer audience questions live at the end of the panel discussion; you can submit a question when registering or via the chat room or Twitter during the broadcast.
Date: Thursday, September 27, 2018 | Time: 2:30 – 4:00 PM ET
- Lorez Meinhold, Keystone Policy Center
- Sean Ring, Editas Medicine
- Karen Marah, Clark Atlanta University
- Manu Platt, PhD, Georgia Institute of Technology and Emory University
Joining for the Q&A:
- Vic Myer, PhD, Editas Medicine
Mary Hulihan, DrPH, Centers for Disease Control and Prevention