hemoglobinopathy webpage title header

The Michigan Department of Health & Human Services - Division of Lifecourse Epidemiology and Genomics and partners have developed a comprehensive public health plan to address the needs of individuals (children and adults) with hemoglobinopathies, particularly sickle cell disease (SCD) across the life span.  Although life expectancy for individuals with SCD has increased significantly during the past 40 years, there is still a need to find new ways of addressing the disease burden. The 3-year plan was released in October 2015 - A Public Health Strategic Plan to Address Sickle Cell Disease Across the Lifespan 2015-2018.

Look below for supporting material to learn about each of the public and stakeholder engagement activities involved.

Celebrating 27 Years of Sickle Cell Screening: Newborn Screening Surveillance Report
This report describes twelve hemoglobinopathy indicators for Michigan, as well as comments about their significance and potential utility.  The indicators are related to: incidence, confirmatory diagnosis, antibiotic prophylaxis, patient education, immunizations, public insurance, enrollment, transcranial doppler screening, hydroxyurea treatment, emergency department visits, inpatient hospitalizations, and outpatient visits.  Michigan data on these indicators provide benchmarks for hemoglobinopathies related to Healthy People 2020 objectives.  Further, the findings provide important information to identify gaps in services, and represent an essential step for planning public health action. 

 sickle cell logo

MDHHS Public Health Strategic Planning Updates for Sickle Cell Disease
This report is the product of the collaborative efforts of many people at MDHHS, as well as critical support from partnering agencies and individuals directly impacted by sickle cell disease.

 lifespan image

Hemoglobinopathies is the medical term for a group of blood disorders and diseases that affect red blood cells.  These disorders include both SCD and thalassemia.
normal cells and sickle cells

Sickle Cell Disease is a genetic condition that is present at birth.  In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a "sickle."  The sickle cells break down early, which causes a constant shortage of red blood cells.  The cells can also get stuck while travelling through small blood vessels.  This leads to clogged blood flow and causes pain and other serious problems.  The abnormal shape of red blood cells also contributes to additional medical conditions throughout the life span, including strokes, pneumonia, congestive heart failure, and blocked blood flow in the spleen or liver, among others.  Similarly, SCD is associated with premature mortality.

"Region 4  Midwest Genetics Collaborative - Hemoglobinpathy Workgroup Education Materials"

Thalassemia is a genetic blood disorder caused when the body doesn't make enough of a protein called hemoglobin, an important part of red blood cells.  When there isn't enough hemoglobin, the body's red blood cells don't function properly and they last shorter periods of time, so there are fewer healthy red blood cells travelling in the bloodstream.

Sickle cell diseases and thalassemia are identified though the Michigan Newborn Screening Program. Sickle cell newborn screening is a blood test that is collected at birth and shows if a baby has sickle cell trait, SCD, or any of the other abnormal hemoglobins.  The most common types of SCD are sickle cell anemia (Hemoglobin SS), Hemoglobin SC disease, sickle beta thalassemia (SB0) and sickle beta thalassemia plus (SB+).


Data Highlights & Resources

  • From 1987-2014, Michigan's Newborn Screening Program has identified 1,785 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 417 African American 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 2,600 newborns with sickle cell trait. 

Registry & Surveillance System for Hemoglobinopathies (RuSH)
RuSH was a federally funded program sponsored by the Centers for Disease Control & Prevention to collect statewide information about people with SCD, sickle cell trait and thalassemia.  Michigan was one of seven states to receive funding from 2010 to 2013.  Pilot programs for RuSH took place in Michigan, California, Florida, Georgia, New York, North Carolina, and Pennsylvania.  The pilot project was designed to assess development of a national surveillance system for people with SCD and thalassema.  The information collected and lessons learned will assist in determining how a long-term surveillance program may be implemented in the future.


Partners & Support

  • Sickle Cell Disease Association of America, MI Chapter Inc. (SCDAA-MI)
    SCDAA-MI provides confirmatory diagnostic testing, genetic counseling, and social work services for sickle cell patients 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 four condition-specific committees that provide quality assurance oversight to Michigan's Newborn Screening Program.

For more information, contact:
Dominic Smith, MSA
Hemoglobinopathy Program Coordinator
MDHHS Lifecourse Epidemiology & Genetics Division
Newborn Screening Follow-up Program
(517) 373-5818
smithd82@michigan.gov 

Image Source: University of Missouri
Last updated: February 6, 2017