We can no longer neglect sickle cell disease

Georges Benjamin, MD

Sickle cell disease affects approximately 100,000 Americans. It’s an inherited disorder where red blood cells contort into the shape of a sickle. These cells die early, leaving healthy red blood cells in short supply and intermittently blocking organ blood flow.

If not diagnosed early and properly managed, the disease can lead to serious complications, including severe pain, infection and stroke, and significantly reduced life expectancy. The many complications of sickle cell disease can make every stage of life extremely difficult for individuals with the disease. Making matters worse, many people living with sickle cell disease are unable to access state of the art care.

National Minority Health Month is a particularly timely moment to address this long-time health challenge and the need to overcome it as the disease disproportionately affects African Americans. While we have clearly made progress since the condition was first reported in 1910, we lack a national commitment to tackle it.

We can and we must do better. We are on the cusp of finding a cure, which would make sickle cell disease among the first genetic diseases for us to do so. We’ve seen some early success using stem cell transplants. There are also a number of new therapies to relieve symptoms and lessen complications but they are not widely used.

One hopeful development in Congress is the introduction of the Sickle Cell Disease Surveillance, Prevention and Treatment Act of 2018 by Senators Tim Scott and Cory Booker. The American Public Health Association joined partner organizations in February to thank the senators for this important initiative and offer our support.

The measure would provide much needed authority to the Centers for Disease Control and Prevention to carry out programs related to the disease. Most important, it would enhance CDC’s population-based surveillance system for the disease helping us to better understand health outcomes and increasing the evidence for improved public health interventions. The legislation would also reauthorize treatment grants that are awarded by the Health Resources and Services Administration to improve access to care and quality of care for people living with sickle cell disease.

Of course, we also need greater investment in health research to help advance options for better treatment and care for people living with this long neglected disease.

Championing progress on sickle cell disease is an important step along the path to improving health equity, where we assure that everyone has the opportunity to attain their highest level of health. Without progress, we leave too many people behind. The public health community will focus on achieving health equity during the APHA Annual Meeting and Expo in November.

Georges Benjamin, MD, is executive director of the American Public Health Association.

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