Legislative Advocacy Network

Sickle Cell Disease Association of America, Inc. (SCDAA) actively works with legislators and regulators at both the state and federal levels to advance policies that will maximize the quality of life of people affected by Sickle Cell Disease. SCDAA partners with our allies in Congress to increase funding for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection program to expand the CDC’s capacity across the nation. SCDAA also works with Congress to increase funding for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), which is overseen by the Health Services and Resources Administration (HSRA). In 2021, SCDAA successfully pushed to establish a Sickle Cell Disease Caucus in Congress to create a conduit for the community’s voice to Congress. SCDAA plans to expand the caucus by recruiting more members. As in previous years, SCDAA plans to utilize our grassroots network, the National Sickle Cell Advocacy Network (NSCAN), to advocate on behalf of the community during National Advocacy Days in March 2022. For any questions about the legislative advocacy network please contact John Otsuki.