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EDITORIAL: Sickle cell fight goes on beyond Sept.

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Too few U.S. kids with sickle cell anemia get a needed screening for stroke.

A new study released by the Centers for Disease Control and Prevention found fewer than half get the screening and only about half or fewer get a treatment that can help with pain and anemia. The CDC is calling for more screening and treatment.

Sickle cell anemia is a leading cause of stroke in children. The disease can shorten life expectancy by more than 20 years and lead to complications, the CDC's Dr. Karen Remley told The Associated Press.

“These complications are preventable — not inevitable,” she said in a statement.

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Putting a focus on sickle cell has been a priority for South Carolina Republican U.S. Sen. Tim Scott. His Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, approved in 2018, has increased efforts to collect data to accurately measure the number of Americans affected by sickle cell disease.

And it reauthorized through 2022 the Sickle Cell Disease Treatment Demonstration Program, which includes expanding support services for adolescents making the transition to adult care.

Sickle cell disease -- also called sickle cell anemia -- 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.

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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. At least 17 innovative therapies (gene, cell, and otherwise) are currently in development to treat SCD, but current treatment options are limited, and access gaps are sure to persist, even as cures and other promising medications come to market.

The program created by the Scott legislation allows the U.S. Department of Health and Human Services 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 calendar has turned to October, and the fight against sickle cell must go on beyond September's Sickle Cell Disease Awareness Month.

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As Scott has said: The goal is to "help our medical community fight — and one day, cure — this painful disease.”

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