September is National Sickle Cell Anemia Month. For more than 700,000 Americans living with the disease, this is not a time to celebrate. For them and their families, more help is needed to improve access to quality healthcare and to increase funding for more significant research and treatment advances.

Sickle cell is a hereditary blood disorder primarily impacting people of African descent. It causes blockages along the walls of cells that either slow down or stop the flow of blood reducing the body’s oxygen level. When the “C” or sickle shape of red blood cells get stuck, it causes severe pain and infections, or even strokes, acute chest syndrome, organ damage and blindness. While those living with the disease have a life expectancy of 50 or 60 years, the damage the disease can cause to organs severely impacts the quality of life and can cause death during a “crisis.”

Some policy advances have helped to bring greater awareness to the disease. In most states, including D.C., all newborns are tested for the SCD at birth since sickle cell anemia is an inherited disease. Still, greater education is needed to inform parents of the risks when both or either has sickle cell anemia or the sickle cell trait.

Additionally, since pain medication is the only treatment available to sickle cell patients, far too many are being denied medication due to the opioid epidemic. Greater awareness and training are needed for medical personnel who too often misdiagnose an SCD patient’s needs when they show up in the emergency room with an acute crisis.

A 2016 poll by the National Newspaper Publishers Association, Howard University and Pfizer showed that while African Americans have a significant awareness about the disease, in the case of sickle cell, they also had a positive response to the need for clinical trials, a feeling not often held for clinical trials overall.

Still greater advocacy is required to encourage the Senate to pass The Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act (S. 2465), sponsored by Sens. Cory Booker (D-N.J.) and Tim Scott (R-S.C.). A bill introduced in the House by Reps. Danny Davis (D-Ill.) and Michael Burgess (R-Texas) passed last March.

When the Senate has received thousands of phone calls from sickle cell prevention advocates and others who want sickle cell disease eradicated, that’s when the celebration can begin.

WI Guest Author

This correspondent is a guest contributor to The Washington Informer.

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