Michigan is taking a major step to address a health crisis that has quietly affected thousands of residents: sickle cell disease (SCD), an inherited blood disorder that causes red blood cells to form a sickle or crescent shape, blocking blood flow and leading to pain crises, serious infections, strokes, and organ damage. The Michigan Department of Health and Human Services (MDHHS) recently announced a new strategic plan spanning 2026 through 2030 that builds on more than a decade of work to improve care and services, with a heightened focus on reducing barriers for adults living with the disease. Approximately 4,000 individuals in Michigan currently live with SCD, yet many adults have struggled to access the care and support they need. The new plan represents a shift in how the state approaches this chronic condition, centering the voices and lived experiences of those most affected by the disease. By collaborating with individuals living with SCD, caregivers, health care providers, advocacy organizations, and community partners, MDHHS identified six strategic goals to guide continued progress. Why Has Adult Sickle Cell Care Been Such a Challenge? For years, addressing the needs of adults with SCD has been a major challenge in Michigan's health care system. Unlike children, who often receive coordinated care through specialized pediatric programs, adults with SCD frequently fall through the cracks when they age out of childhood services. This transition period has left many adults without consistent access to disease-modifying therapies, specialized providers, and integrated support services. The new strategic plan directly tackles this gap by expanding eligibility for enhanced services across the lifespan. "For years, addressing the needs of adults with SCD has been a major challenge. Through our partnership in expanding Children's Special Health Care Services age eligibility for people with sickle cell disease across their lifespan, innovative efforts are underway to enhance the capacity of the health care system to better serve this community," said Sarah Lyon-Callo, state epidemiologist and senior deputy director of MDHHS' Public Health Administration. Sarah Lyon-Callo, State Epidemiologist and Senior Deputy Director, MDHHS Public Health Administration What Are the Six Strategic Goals of Michigan's New Plan? The MDHHS strategic plan outlines a comprehensive roadmap for improving outcomes and expanding access to care. These goals reflect input from the sickle cell community and address the most pressing barriers to quality care and support. - System Collaboration: Implement system changes that center the needs of the SCD community through collaboration with health care providers, advocacy organizations, and community partners. - Statewide Access: Ensure access to high-quality, integrated treatment and support services available throughout Michigan, not just in major urban centers. - Community Education: Provide continuous education to increase awareness of best practices, resources, and information for SCD among patients, providers, and the general public. - Evidence-Based Standards: Utilize standards of care and protocols that improve patient outcomes and ensure consistency across health care settings. - Medication Adherence: Improve prescription of and adherence to disease-modifying therapies that can slow disease progression and reduce complications. - Data-Driven Metrics: Use data to establish metrics that enhance health outcomes and identify gaps in care before they become crises. How Will Michigan Track Progress and Measure Success? Data will be central to the plan's success. The Michigan Sickle Cell Data Collection (MiSCDC) Program tracks progress, identifies gaps, and informs solutions that can improve outcomes for individuals living with SCD. During the first year of implementation, a SCD strategy team will develop communication, project management, and evaluation plans to keep community partners informed and monitor improvements. "Data is vital to closing gaps, improving outcomes and supporting individuals with sickle cell disease throughout their lives. MiSCDC leverages data and partnerships to inform policy to ensure that people with SCD get the care they need, when they need it," said Dr. Sarah Reeves, principal investigator of the MiSCDC Program. Dr. Sarah Reeves, Principal Investigator, Michigan Sickle Cell Data Collection Program The strategy team will meet at least twice per year to review plan updates and assess whether the state is meeting its goals. This ongoing evaluation process ensures that the plan remains responsive to the needs of the community and that resources are directed toward the most effective interventions. Who Is Most Affected by Sickle Cell Disease? While SCD most commonly affects individuals of African descent, it also impacts people of Middle Eastern, South Asian, Hispanic, and Mediterranean backgrounds. The disease represents significant public health concerns due to its high disease prevalence, elevated rates of illness and death, and its disproportionate impact on certain populations. Understanding these disparities is essential for ensuring that prevention and screening efforts reach all communities that need them. Michigan's new strategic plan builds on the foundation laid by the state's first SCD strategic plan, launched in 2015, which materialized into a decade of multi-faceted initiatives to improve care and services. The MDHHS Lifecourse Epidemiology and Genomics Division will continue to lead implementation of the plan, with participation and collaboration from internal programs and external partners. By centering the voices of those most affected by the disease and using data to guide improvements, Michigan is working toward a health care system that ensures every person living with sickle cell disease has access to the care and support they deserve.
