RICHMOND, Va. — Sickle cell disease impacts more than 100,000 people in the United States, including one in 500 African Americans and one in 36,000 Hispanic Americans. It’s estimated that more than two million Americans are carriers of the sickle cell trait.
Delegate Delores L. McQuinn and other supporters gathered Wednesday at the General Assembly Building to share their voices about the need of House Bill 2500, the Florence Neal Cooper Smith Sickle Cell Research Endowment Fund.
The bill is named in recognition of Florence Neal Cooper Smith, who was also in attendance. Cooper Smith dedicated more than 40 years to sickle cell research and education.
McQuinn says this endowment will ensure that Cooper Smith’s commitment to improving lives with the debilitating disease continues through research, improved quality of care, awareness and education about the disease.
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Among those who spoke were two mothers who say they have painfully watched their children suffer through the disease for years.
“When my daughter was born, I got a call a few weeks later, 'Your baby has sickle cell, she won't live long. She'll be in pain all the time, have a great day,' Where were the resources? I had to find them myself.” said Delegate Candon London King whose 14-year-old daughter has sickle cell disease.
King says resources and research have improved in the Commonwealth. However, there's still pockets of the community in need.
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"We have great care throughout Virginia, but we often don't have care in places where people need it the most, in rural and underserved communities, where people with sickle cell have to drive hours, sometimes to receive the care that they need. What's worse than watching your baby in pain and even the strongest drugs don't help? What could be worse than that having a government that ignores that pain," King said.
Another mother, Melinda Lawson, shared how her now 19-year-old son once described the crippling pain of the disease.
"No one knows what it's like to live with sickle cell except sickle cell patients. And when he finally got to a place in his life when he could verbalize instead of just point to the area where it hurt, he said, Mom, it feels like shards of glass trying to pass through my veins. So together, I implore you, let's work on a cure for everyone," Lawson said.
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The bill has passed the House Appropriations Committee and is moving to the Senate for further consideration. McQuinn asked for constituents to support the bill by writing or calling Virginia’s Senators in support of House Bill 2500.
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