RD136 - Report to the House Appropriations and Senate Finance Committees of the Virginia General Assembly on Community-Based Sickle Cell Programs - June 30, 2011

Executive Summary:
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. At inception of the program, centers for comprehensive follow-up care were unavailable. In 1994, Virginia began to provide statewide comprehensive sickle cell services to decrease morbidity and mortality among children. 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 alone cannot address the multiple social, psychological, and educational needs of individuals living with chronic illnesses such as sickle cell disease.

Community-based programs provide formal and informal resources to support the development of coping strategies and networks of support for families impacted by sickle cell disease — addressing unmet social, psychosocial, and educational needs. A network of community-based sickle cell disease organizations provides a variety of support services across the Commonwealth.

During the 2010 General Assembly session, $90,000 was appropriated to the Virginia Department of Health (VDH) for FY2011 and FY2012 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 is 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.

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

Community-Based Organizations Funding Status FY11

VDH issued a Request for Proposals (RFP) for community-based Sickle Cell Support Services on July 16, 2010. The RFP was issued via Virginia’s web-based purchasing system, Virginia Business Opportunities (VBO), where registered vendors received notice that the solicitation was open. In addition, 14 potential providers (e.g., community-based organizations and medical facilities) statewide received individual notification of the RFP. The response date and time for the RFP was August 16, 2010, at 3:00pm. The RFP solicited non-clinical activities that provide assistance, education, and family-centered support for individuals with sickle cell disease.

VDH received three proposals in response to the RFP from the following organizations:

• Sickle Cell Association of Richmond – OSCAR
• Children’s Hospital of the King’s Daughters
• Fredericksburg Area Sickle Cell Association, Inc.

The three aforementioned organizations were awarded funding to begin community-based services on October 1, 2010. Table 1 summarizes state funding provided by VDH to those community-based programs in FY11. Table 2 provides a summary of the community-based education and outreach activities performed as of March 31, 2011. Contractors will continue to conduct activities until the end of the fiscal year (June 30, 2011). Upcoming events include two transition conferences that will be hosted by the Children’s Hospital of The Kings Daughters and Sickle Cell Association of Richmond-OSCAR. A majority of the activities provided focus on mental and social well-being. These stress-reducing activities have a positive effect on physical well-being.