MDHHS announces new plan to address sickle cell disease

LANSING, Mich. – The Michigan Department of Health and Human Services (MDHHS) announces the release of a new sickle cell disease (SCD) strategic plan that continues more than a decade of work to improve care and services to individuals with SCD, with a heightened focus on reducing barriers for adults who live with the disease.

The 2026–2030 Strategic Plan is guided by community input, amplifies the voices of those most affected by the disease and outlines strategies to raise awareness, expand access to care and therapies, and strengthen public health surveillance. The plan builds on the foundation laid by Michigan’s first SCD strategic plan, launched in 2015, which materialized into a decade of multi-faceted initiatives to improve care and services.

“MDHHS is committed to improving care, support, education and health outcomes for individuals living with sickle cell disease,” said Elizabeth Hertel, MDHHS director. “This strategic plan reflects the voices of the sickle cell community and outlines actions to expand access to care, strengthen data and continue advancing support for those impacted across Michigan.”

SCD is an inherited blood disorder that causes red blood cells to form a sickle or crescent shape. The misshapen cells can block blood flow, causing complications such as pain crises, serious infections, strokes and organ damage. Approximately 4,000 individuals in Michigan currently live with SCD.

Lived experience remains a guiding principle throughout the department’s work connected to SCD. 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:

1. Implement system changes that center the needs of the SCD community through collaboration.
2. Ensure access to high-quality, integrated treatment and support services statewide.
3. Provide continuous education to increase awareness of best practices, resources and information for SCD.
4. Utilize standards of care and protocols that improve patient outcomes.
5. Improve prescription of and adherence to disease-modifying therapies.
6. Use data to establish metrics that enhance health outcomes.

The MDHHS Lifecourse Epidemiology & Genomics Division will continue to lead implementation of the plan, with participation and collaboration from internal programs and external partners. A SCD strategy team will meet at least twice per year to review plan updates. During the first year, the strategy team will develop communication, project management and evaluation plans. These plans will be used to keep community partners informed, track efforts and monitor progress, improvements, and decision making.

“For years, addressing the needs of adults with SCD has been a major challenge,” said Sarah Lyon-Callo, state epidemiologist and senior deputy director of MDHHS’ Public Health Administration. “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.”[SD4] [LS5] 

Using data to guide improvements to the strategic plan, the Michigan Sickle Cell Data Collection (MiSCDC) Program tracks progress, identifies gaps and informs solutions.

“Data is vital to closing gaps, improving outcomes and supporting individuals with sickle cell disease throughout their lives,” said Dr. Sarah Reeves, principal investigator of the MiSCDC Program. “MiSCDC leverages data and partnerships to inform policy to ensure that people with SCD get the care they need, when they need it.”

SCD represents significant public health concerns due to its high disease prevalence, elevated rates of morbidity and mortality, and its disproportionate impact on certain populations. While the disease most commonly affects individuals of African descent, it also impacts people of Middle Eastern, South Asian, Hispanic and Mediterranean backgrounds.

To learn more about SCD and statewide efforts to improve care and outcomes, visit Michigan.gov/SickleCell.

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