RD196 - Funding for Community-Based Sickle Cell Disease Programs


Executive Summary:
Sickle cell disease (SCD) is a serious blood disorder that causes chronic anemia, episodes of extreme pain and damage to major body organs. It is the most common genetic disorder identified in the African American community and affects approximately 3000 Virginians. During the 2007 General Assembly Session, funding for medical management services increased to $450,000 a year and a yearly allocation of $100,000 from general funds was approved for service grants to community-based programs that provide education and family-centered support for individuals suffering from SCD. The purpose of this allocation was to assist individuals and families living with SCD to develop the necessary skills and resources to improve their health status, family functioning, and self-sufficiency. Item 297S of the Appropriation Act requires the Virginia Department of Health (VDH) to develop criteria for distributing these funds, including specific goals and outcome measures, and to submit an annual report detailing program outcomes.

Following the issuance of a Request for Proposals by VDH, the following programs were issued contracts:

1. Fredericksburg Area Sickle Cell Association, Fredericksburg;
2. Sickle Cell Association of Hampton Roads, Norfolk; and
3. Organization of Sickle Cell Anemia Resources, Richmond

VDH monitors all contracts through a combination of individual site visits, telephone calls, written communication, review of quarterly progress reports and billing activities. As of June 30, 2008, the funded programs have only been operational for nine months. VDH is unable to report on measurable outcomes at this time. However all programs have made significant progress in their efforts to fulfill the purpose of the funding. Specifically, there is greater public awareness of SCD and enhanced sickle cell patient functioning and self-sufficiency.

VDH plans to partner with funded programs in an effort to strengthen their umbrella organization, Statewide Sickle Cell Chapters of Virginia, Inc. This will be done through ongoing training and program development activities. VDH recognizes the need to contract with a culturally competent organization or individual with experience in community-based, non-profit minority health related program development.