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MDH and Sickle Cell Foundation meeting in Atlanta
Minnesota wrapped up its first year of the Sickle Cell Data Collection (SCDC) grant at the end of September. Jay Desai and Amanda Maresh, from the Minnesota Department of Health, and Rae Blaylark, from the Sickle Cell Foundation of Minnesota, attended the SCDC Summit on Oct. 28, 2024, at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia along with 80 others and an additional 359 online participants.
Rae, Jay, and Amanda also attended the SCDC reverse site visit the following day with 15 other states participating in the grant. This year, states focused on creating materials to increase awareness about sickle cell disease. Some states shared SCDC success stories they had written, while others, including Minnesota, shared their photoblog projects.
To learn more about the SCDC Success Stories, visit:
Over the past couple of years, Minnesota co-led an assessment of state sickle cell data collection programs and state community-based sickle cell disease organizations. This was a community-participatory project between community members and SCDC colleagues. The goal was to better understand how to successfully improve the lives of individuals with sickle cell disease and their families by working together.
An engagement framework has been developed, which the CDC SCDC program is now using with all 16 state SCDC programs.
As Minnesota moves into the second year of the grant, we are excited to:
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Present updated information on emergency department and hospital encounters.
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Release statewide SCD estimates and demographics from the Minnesota All Payers Claims Data.
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Update information on longitudinal follow-up of newborns with SCD.
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Begin constructing a comprehensive medical records and claims database to better understand the scope, burden, quality of care, and outcomes of individuals living with SCD in Minnesota.
Minnesota SCDC partners will continue to actively promote communications, partnerships, programs, and policies to support Minnesotans impacted by SCD and SCT.
January is National Blood Donor Month
Every two seconds, someone in the United States is in need of a blood transfusion. Donating blood is a great way to give back and help those in need. Individuals living with Sickle Cell Disease need multiple blood transfusions throughout their lifetime.
Transition to College Toolkit
Navigating the transition to college can be challenging, especially for individuals with sickle cell disease. The Health Resources and Services Administration (HRSA) recently released a comprehensive transition to college toolkit to help students and their families prepare for this significant milestone, HNCC: A Guide To College Transition For Sickle Cell Warriors 2024 (PDF). This resource offers practical guidance on managing health care, accessing accommodations, and ensuring a smooth transition into college.
Provider Toolkit
The U.S. Department of Health and Human Services Centers for Medicare & Medicaid Services (CMS) has released a new resource: CMS Sickle Cell Disease (SCD) Health Care Provider Toolkit: Resources for Health Care Professionals to Support Individuals with SCD (PDF). This new toolkit builds on the CMS Sickle Cell Disease Action Plan (released in September 2023) to strengthen the infrastructure for primary care and other care settings to care for people with sickle cell disease, improve care management, and assist providers with supporting the needs of people with SCD and other chronic conditions.
The SCD Toolkit consists of six sections that equip health care providers in delivering quality care to individuals with sickle cell disease. This toolkit is designed to assist the care team in supporting people by introducing SCD, including the common barriers to care, and summarizing CMS program coverage for services around social determinants and drivers of health and new sickle cell disease treatment.
Patient Innovations podcast
Check out the Patient Innovations podcast, sponsored by HealthcareMN. Podcast hosts discuss sickle cell disease with Dr. Ashish Gupta, MD from the University of Minnesota; Rae Blaylark, Executive Director of the Sickle Cell Foundation of Minnesota; and DM, sickle cell warrior.
Check out the latest CDC Bloodline newsletter
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