Sickle Cell Disease Association of America Receives $11.6 Million Grant for Follow–Up Services

The Health Resources and Services Administration (HRSA), part of the U.S. Department of Health and Human Services, has awarded the Sickle Cell Disease Association of America (SCDAA) a $2.9 million annual grant for the next four years to establish a national infrastructure to ensure sickle cell disease (SCD) patients receive appropriate follow–up care services including counseling, education, and home care.

The grant was given through the HRSA’s Sickle Cell Disease Newborn Screening Follow-up Program.

The funding will target the following goals:

• Identify and support community–based organizations (CBOs) to educate and redirect patients to appropriate care in up to 17 U.S. states.
• Collaborate with state CBO partners to provide care coordination, medical home assistance, and other services to at least 15,000 non-active patients.
• Recruit, train, and retain at least 150 community health workers (CHWs) via a proprietary curriculum developed by the SCDAA.
• Provide technical assistance to CBOs when outreaching to SCD patients.
• Create partnerships with providers and share resources to involve individuals and families in care.
• Develop, promote, and ensure application of core skills for CHWs in SCD.
• Establish and manage a publicly available online repository of sickle cell–related evidence–based materials (such as articles, books, and other resources) to be used by adult and pediatric SCD patients.
• Develop partnerships with stakeholders from the public and private sectors to address emerging issues related to sickle cell disease and sickle cell trait.

As the lead organization behind HRSA’s Sickle Cell Disease Newborn Screening Program, SCDAA in the past two years has provided administrative and infrastructure support to 25 member and non-member CBOs in 19 U.S. states, enhancing their capacity. It launched a National SCD Community Health Workers Training Program and trained more than 85 CHWs. It also developed a shared management system to collect and analyze patient data for HRSA and to report data outcome measures.

“SCDAA is eternally grateful to have been selected for this opportunity and excited to continue our strategy for strengthened support and services nationwide,” Sonja L. Banks, SCDAA president and chief operations officer, said in a press release. “As the nation’s largest and oldest member-based sickle cell advocacy organization, SCDAA is well-positioned to execute the Sickle Cell Disease Newborn Screening Follow-up Program. Over the past two years, we have had tremendous success with the Sickle Cell Disease Newborn Screening program. We look forward, with this additional funding, to continue increasing access to care while building a larger community of informed, active and motivated patients. We are more dedicated than ever to leading the charge for positive change in the sickle cell community.”