RD158 - Report to the House Appropriations and Senate Finance Committees of the Virginia General Assembly on Community-based Sickle Cell Programs - June 30, 2010


Executive Summary:
This report was replaced in its entirety by the Virginia Department of Health on July 23, 2010.

The Code of Virginia places responsibility for sickle cell screening and treatment with the Commissioner of Health. Virginia began screening all newborns for sickle cell disease in July of 1989. However no follow-up centers for the delivery of comprehensive care were identified. Beginning in 1994, in order to decrease morbidity and mortality among children, Virginia began to provide statewide comprehensive sickle cell services. The provision of comprehensive care is a time-intensive endeavor that includes ongoing patient and family education, periodic comprehensive evaluations and other disease-specific health maintenance services, psychosocial care, genetic counseling and transition services. However, research demonstrates that the medical management model can not address the multiple social and psychological and education needs of individuals living with a chronic disease such as Sickle Cell Disease. Consequently, community-based services are a key component of support for sickle cell clients and their families. A volunteer network of regionally located community-based sickle cell organizations provides a variety of services across the Commonwealth.

During the 2007 General Assembly Session, $100,000 was appropriated to the Virginia Department of Health to provide service grants to community-based programs for education and family centered support for individuals and families with a diagnosis of sickle cell disease. The intent of the funding was to support local community activities that would enable individuals and families living with sickle cell disease to develop the necessary skills and resources to improve their health status, family functioning and self-sufficiency.

Subsequent state budget actions reduced the appropriation for this program to $50,000 in FY08. Starting in FY09, annual appropriations were as follows:

• FY09 - $95,000
• FY10 - $81,000
• FY11 - $90,000
• FY12 - $90,000

Item 288Q of the 2010 Appropriation Act requires that VDH develop criteria for distributing these funds, including specific goals and outcome measures and submit an annual report to the House Appropriations and Senate Finance Committees of the Virginia General Assembly detailing program outcomes.