This past December, the U.S. Food and Drug Administration approved the first cell-based gene therapies for treating sickle cell disease. It was widely regarded as a milestone and an innovative advancement in the field of gene therapy.
In its ongoing quest to remain relevant after nearly 50 years on the air, Saturday Night Live (SNL) chose to perform a skit centered on the groundbreaking news of the treatment for sickle cell disease (SCD).
While we believe the intent of the skit was altruistic – to provide visibility to a dreaded disease that remains unknown to most Americans – the skit missed the mark veering into stereotypes and tropes.
Sickle cell disease affects 16,000 Georgians who often suffer debilitating pain, organ damage and ostracism as a result of their condition. It’s no laughing matter to them and their families.
SCD is an on-going, major health issue for more than 1% of Black Americans. The disease is more common in certain ethnic groups including people of African descent, Hispanic Americans from Central and South America and people of Middle Eastern, Asian, Indian, and Mediterranean descent, according to NORC (formerly the National Opinion Research Center) at the University of Chicago.
SCD is a genetically inherited disease which reduces the amount of oxygen going to the body’s tissues. Red blood cells become sickle shaped and interfere with normal blood flow. That results in disabling pain and a variety of other symptoms, including stroke, anemia, breathing issues, and impotence. There are also associated mental health problems.
SCD is prevalent in every Southern state, including Georgia which has the fourth highest number of cases. There are 7,088 Georgia residents who have been identified as having this disease. Many others have it and go undiagnosed due to a lack of information. That information deficit is also a problem among providers. There are relatively few practitioners who have specific expertise in treating sickle cell disease, according to the American Society of Hematology.
Funding to address this shortfall has historically been inadequate at both the state and federal levels, although in recent years more governors and legislatures have become aware of the extent of the disease in their states.
In summary, there is an urgent need to help the American public become more aware of sickle cell disease and the critical need for increased funding to help cure it. Just as important, there must be permanent funding for needed services to help improve the day-to-day lives of people with sickle cell disease. And finally, there must be additional training for providers to help end the stigmas and stop the stereotyping of people living with sickle cell disease. While humor can definitely heal, using sickle cell disease as the punchline for a joke is not funny. It’s a matter of life and death to all of those affected by sickle cell disease and their families and loved ones.
Tabitha McGee and Jack Bernard
[Tabatha McGee is the Executive Director of the Sickle Cell Foundation of Georgia, Inc. (SCFG). Jack Bernard is Chair of the Fayette Board of Health, on the Executive Board of the Georgia Public Health Association and on the Boards/Committees of many more national and state health organizations.]
