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RICHMOND
--State Sen. Edd Houck admits he knew little about sickle cell anemia, a blood disease that disproportionately affects African-Americans, before last fall.But then former Fredericksburg Mayor Lawrence Davies--whose daughter Lauren died of complications related to sickle cell anemia in 1993--invited Houck to a conference on sickle cell disease being held in Fredericksburg.
Houck went early, and sat in on some meetings, and left with a lot more information about the disease and how the state could do more to help sufferers.
Now, Houck, D-Spotsylvania, and other senators are introducing a budget amendment that would direct more state money to community groups that help sickle cell sufferers, as well as hospitals that have sickle cell programs.
The state gives $250,000 a year to Pediatric Comprehensive Sickle Cell Services programs, which operate at four hospitals in Virginia.
But that level of funding has remained the same since 1994, even as the number of children treated for sickle cell anemia at the programs has grown by 165 percent. In 1994 the sickle cell centers served 412 patients; in 2005, they served 1,181.
The increase is due, at least in part, to greater awareness and diagnosis of the disease; infants are now screened for sickle cell anemia. But the stagnant funding means that services and support have been cut back. According to a report from the Department of Health, which oversees the programs, the amount of funding "is no longer sufficient to provide the services that are recommended as standard of care for this population."
Houck and other Democratic senators are proposing a budget amendment of $532,900 to pay for seven new workers through the Department of Health, to provide services such as patient tracking, family support, training for community providers, and help for patients transitioning to the adult health care system.
The group is also proposing a budget amendment to allow community groups that help provide sickle cell services to apply for grants. Currently, many community organizations do sickle cell work, but receive no state money for it.
"I was overwhelmed at what those community-based [groups] were being called upon to do," Houck said. "It's absolutely fitting that we have state funding going back to community organizations."
Other senators who spoke about the amendments yesterday included three black senators, all of whom have had friends and family affected by sickle cell anemia.
"It's not a pretty thing to see a person who's in crisis with this ailment," said Sen. Mamie Locke, D-Hampton, who said her best friend's brother died of sickle cell anemia when he was 26.
Sen. Louise Lucas, D-Hampton, said at one point, doctors thought she carried the trait for sickle cell anemia.
The senators said there has not been an effort in the years since 1994 to raise the amount of funding for the sickle cell centers. But, Lucas said, now there is a growing advocacy effort.
"The squeaky wheel gets the grease," she said.
Chelyen Davis: 804/782-| Sickle cell anemia is an incurable disease in which the body makes abnormally shaped red blood cells.
They are shaped like a sickle (or crescent). These "sickle cells" are hard and sticky and they don't move easily through blood vessels. They tend to get stuck and block the flow of blood to the limbs and organs. This can cause pain, organ damage, and a low blood count (anemia). Sickle cell anemia is an inherited disorder and it affects millions of people. The disease occurs in approximately 1 in every 500 African-American births and 1 in every 900 Hispanic American births. Sources: National Institutes of Health, American Sickle Cell Anemia Association |
| LAUREN A. DAVIES, the daughter of former Fredericksburg Mayor Lawrence Davies, died in 1993 at age 36 from complications from sickle cell anemia. She was diagnosed when she was a baby. She received the Mary C. Burnett Award for community service twice.
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A Sickle Cell Awareness event, April 16 at the Central Rappahannock Regional Library on Caroline Street, will include a film, discussion, speakers and personal testimonies. It's being held in conjunction with the Fredericksburg Area Sickle Cell Association. A walk-a-thon fundraiser is scheduled for May 5. |
