Sickle cell disease is the most common genetic disorder in the country; Grant will help gather data, identify next steps to help those afflicted  

The Minnesota Department of Health (MDH) has received a five-year grant from the Centers for Disease Control and Prevention (CDC) to better understand the impact of sickle cell disease in Minnesota as part of the National Sickle Cell Data Collection Program.

Sickle cell disease is one of the most common hereditary disorders in the U.S. Underlying the disease is the malformation of red blood cells, which can lead to anemia, infections, multi-organ damage, stroke, a lifespan shortened by 20 years and excruciating pain. On average, every year in Minnesota, 22 babies are born with sickle cell disease and another 540 are born with sickle cell trait. If both parents have sickle cell trait, their child has a chance of developing sickle cell disease. 

People living with sickle cell disease reside throughout Minnesota and had at least 23,786 emergency department and hospital encounters from 2010 to 2021. According to Minnesota Commissioner of Health Dr. Brooke Cunningham, the new federal funding will help public health officials better understand ways to align available care services with those who have sickle cell disease.

“In Minnesota, the data collection program will help us better understand where people with sickle cell live and where health care providers and resources are located so people receive the best services,” said Commissioner Cunningham. “This will help us work together with partners to improve outcomes and reduce disparities.” 

MDH is partnering with the Sickle Cell Foundation of Minnesota and health care systems across the state as part of the National Sickle Cell Data Collection Program. MDH was a strong candidate for the $1.625 million grant over 5 years due to ongoing partnerships with clinicians and community groups as well as its efforts related to newborn screening and a long-term follow up study. 

Anyone can be born with sickle cell disease or sickle cell trait. Nationally and in Minnesota, sickle cell disease is most common among African Americans. In Minnesota, about 70% of Minnesota babies born with the trait are African American or of African descent. This has made the disease one uniquely impacted by racial, cultural, economic and health inequities. Despite being the most common genetic disorder in the United States, compared to other genetic disorders which affect predominantly white people, sickle cell receives significantly less attention and funding for education, outreach, health care services and research to develop new treatments. 

The national data collection program was created in 2015 to examine how common sickle cell disease is in states, gain insights into its effects, as well as to explore ways in which public health, researchers and health care professionals can enhance the quality of life for people with sickle cell disease. The program was expanded to 11 states, including Minnesota, in 2020 and now covers 16 states.

In 2015, MDH joined with community, health care and public health partners to create the Minnesota Sickle Cell Collaborative. This led to a 2018 community forum in North Minneapolis where participants discussed how racism and historical Black trauma undercut trust between medical providers and patients. As a result of the forum, the collaborative developed the Generations of Unmet Needs (PDF) report, which outlined specific steps to better address the inequities of the sickle cell community.

“Access to comprehensive, high-quality health care for those with sickle cell disease would improve health outcomes and lower hospitalization rates,” said Rae Blaylark, president, and CEO of Sickle Cell Foundation of Minnesota. “Together, Minnesotans can improve the care and lives of every baby born with sickle cell disease and all Minnesotans currently living with sickle cell disease.”  

MDH’s recent activities include working with community partners and clinicians to provide additional online resources and data, such as sickle cell related hospital visits, conducting newborn screening and long-tern follow up, supporting the Minnesota Rare Disease Advisory Council, and improving MDH’s ability to track and measure the impact of sickle cell disease in Minnesota. Learn more at MDH Sickle Cell Disease or the Sickle Cell Foundation of Minnesota.