South Carolina U.S. Sen. Tim Scott is a step closer to his goal of putting a national focus on finding answers for sickle cell disease.
The disease -- also called sickle cell anemia -- is a painful, disabling blood disorder. It gets its name from the shape of the red blood cells in a person with the disease. The red blood cells in those patients are crescent, or sickle-shaped, as opposed to the normal round disc-shaped red blood cells that can easily move through vessels and arteries.
Complications can be treated and pain medications given, but the sickling of the cells cannot be reversed.
Sickle cell anemia is not contagious and the only cure is a bone marrow/stem cell transplant. But those transplants are extremely risky and can result in serious side effects, even death.
Scott, R-S.C., and Sen. Cory Booker, D-N.J., introduced an initiative, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act. With no national framework in place to accurately measure the number of Americans affected by SCD, the bipartisan legislation would increase efforts to collect data on the disease and reauthorize the Sickle Cell Disease Treatment Demonstration Program.
The Senate has given unanimous approval to the act, with Scott stating afterward:
"One of the pillars I base my public service on is giving a voice to the voiceless, and that is exactly what my Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act does. I am thrilled that the Senate unanimously passed my bill to ensure that we work to improve our medical understanding of this disease through enhanced data collection and public health initiatives.
“For far too long has this inherited disease been overshadowed in the public sphere and I am encouraged that, by the passage of it, our world-renowned medical communities will one day find a way to better treat and cure the 100,000 people across our nation who are affected. I encourage my House colleagues to examine the merits of the bill and work with me to ensure that it quickly heads to the president’s desk."
While the CDC estimates 100,000 Americans suffer from sickle cell disease, the exact figure is unknown because of limited efforts to collect data on the disease. The program created by the legislation would allow HHS to issue grants to no more than 20 eligible entities (defined as states, state health or public health departments, and institutions of higher education) for the purposes of:
• Collecting data on the demographics and prevalence of sickle cell disease.
• Conducting public health initiatives with respect to the disease.
• Identifying and evaluating strategies for SCD prevention and treatment.
The bill also reauthorizes the SDTDP through 2022 with $18 million, which includes expanding support services for adolescents making the transition to adult care.
New emphasis on sickle cell disease is good news to the sufferers looking for relief and to those working to prevent it. The House should follow Scott’s recommendation and move the legislation ahead to the president’s desk for his signature.