Michigan Hemoglobinopathy Quality Improvement Program

Michigan’s Hemoglobinopathy Quality Improvement Program

What it is:

Michigan’s Hemoglobinopathy Quality Improvement Program works to implement a comprehensive public health plan to address the needs of children and adults with hemoglobinopathies, particularly sickle cell disease across the lifespan.

Under the fiscal year 2022 budget signed by Gov. Gretchen Whitmer, Children’s Special Health Care Services (CSHCS) has expanded to include coverage for adults with SCD, making Michigan one of the first states to expand medical benefits to those affected with SCD past the age of 21.

How it works:

The MDHHS Public Health Genomics Section is working to expand sickle cell disease care. These clinics, with the help of grants, offer new resources to providers to increase patient access to quality health care and improve care coordination, as well as establish preferred provider networks that focus specifically on sickle cell disease (SCD).

• Michigan State University is working to establish a lifespan sickle cell center in Lansing within their Inherited Blood Disorder Service. The clinic will be staffed by a multi-disciplinary team and will be available to both pediatric and adult patients with SCD.

•University of Michigan is working to improve adherence of healthcare providers to national guidelines and increasing its patient/caregiver adherence to preventative care including appointments and disease-altering treatments/medications. Find out more about it here.

•Henry Ford Health is focusing on assuring a smooth transition of patients from pediatric to adult care, as well as work to assure improved access to other specialty and treatment management services, such as orthopedics, pain management, and allied services.

The Michigan Department of Health and Human Services is also in collaboration with the University of Michigan's Child Health Evaluation Research Center and the Sickle Cell Disease Association of America - Michigan Chapter, are excited to share our state's Sickle Cell Disease Partners Call to Action. There are multiple cross-cutting initiatives currently happening with many more on the horizon. 

Partners

• Sickle Cell Disease Association of America, MI Chapter Inc. (SCDAA-MI)
  SCDAA-MI provides confirmatory diagnostic testing, genetic counseling, and social work services for individuals with sickle cell through a network of outreach sites in Detroit, Grand Rapids, Kalamazoo, Lansing and Saginaw. 
• Michigan Hemoglobinopathy Quality Improvement Committee (MIHemQIC)
  The MIHemQIC reviews diagnosis and treatment services for newborns and children with hemoglobinopathies.  This committee is one of nine condition-specific committees that provide quality assurance oversight to Michigan's Newborn Screening Program.
• The Susan B. Meister Child Health Evaluation and Research (CHEAR) Center at the University of Michigan is one of the largest health services research centers that focuses on children. Their work is multidisciplinary, encompassing health services research, epidemiology, health policy, general pediatrics, and pediatric subspecialties.
• The Center for Disease Control and Prevention (CDC) helps develop health guidance materials based on the American Society of Hematology’s Clinical Practice Guidelines on Sickle Cell Disease. These materials include common complications of sickle cell disease and steps to take for better health.
• Michigan Department of Education helped distribute a Supporting Students with Sickle Cell Disease Standard Care toolkit designed to guide the school nurse or other medical professionals in providing the most complete training according to standards.

Data Highlights from the 2020 MDHHS Newborn Screening Annual Report

• From 1987-2019, Michigan's Newborn Screening Program has identified 2,100 newborns with sickle cell conditions (SS, S/Bthal and SC disease); on average about 62 new cases per year.
• The incidence is 1 in every 320 Black infants born in Michigan are affected with SCD.
• Nearly 75% of Michigan newborns with SCD are born in Detroit/Ann Arbor metropolitan area, with the remaining births occurring primarily in the Saginaw, Flint, Grand Rapids, Muskegon, Kalamazoo, Benton Harbor, Lansing and Jackson areas.
• Each year we identify approximately 2,800 newborns with sickle cell trait.

Resources

Sickle Cell Pain Management Education Webinar for Healthcare Professionals: Produced by the Michigan Public Health Institute in partnership with Hemoglobinopathy Quality Improvement Committee and the Sickle Cell Disease Association of Michigan. 1.5 Nursing Contact Hours. SCD Pain Management Course Flyer.

• Sickle Cell Disease Fact Sheet
• Sickle Cell Trait Fact Sheet
• A Quick Look at Vaccines Needed for Persons with Sickle Cell Disease

• CDC Facts About Sickle Cell Disease
  
• Toolkit for Living Well with Sickle Cell Disease
• Get Screened to Know Your Sickle Cell Status

For more information, contact:

genetics@michigan.gov

Last updated: 03/27/2025