Minnesota Sickle Cell Collaborative

Background

Since 1988, the Minnesota Newborn Screening Program at MDH has been instrumental in identifying children born with sickle cell disease (SCD). The program also ensures that children and their families are connected to specialists with the expertise to provide specialized care.

However, a 2014 report, Advancing Health Equity in Minnesota, noted that although MDH has allocated funds and efforts to address diseases affecting the white population, less emphasis is placed on issues primarily affecting populations of color, including SCD. For those living with SCD in Minnesota, this can lead to a variety of adverse health outcomes, most concerning of which is a decrease in life expectancy.

To better address SCD health disparities identified in the 2014 report, the Newborn Screening Program began sickle cell trait notification directly to families and providers in 2015, and the Minnesota Sickle Cell Collaborative (MN SCC) was created. Made up of community organizers and clinicians, the MN SCC aims to work together to address needs and challenges for people living with SCD in Minnesota.

Stakeholder Forum

In 2018, the MN SCC held the Sickle Cell Stakeholder Forum. More than 60 attendees, including people living with SCD, caregivers of those with SCD, researchers, health care providers, and public health professionals met to discuss needs and identify areas of concern.

The Forum was a collaborative opportunity that brought together impacted community members, clinicians, and public health professionals to have an authentic conversation, identify needs, and ultimately work in partnership to move toward solutions. 

The Forum represented another step toward understanding the challenges and disparities faced by individuals with SCD. Findings from the Forum will be used to generate awareness among policy makers, stakeholders, and the general public; outline actions needed to address these issues; and improve health outcomes for individuals impacted by SCD. 

Stakeholder Forum report

Read the report: Generations of Unmet Needs: Insight and Recommendations from the 2018 Sickle Cell Disease Stakeholder Forum (PDF)

Issues identified through Forum discussions were categorized into eight themes: 

1. Lack of comprehensive care across the lifespan: The absence of comprehensive care across the lifespan disadvantages adults and their ability to receive appropriate treatment that ultimately affects their quality and length of life. 
2. Transition support: There is a gap in care when transitioning out of pediatric specialty care due to an absence of comprehensive adult specialty care, which has resulted in young adults living with SCD having negative medical experiences. 
3. Race, racism, and equity: Due to racial bias and racial disparities, patients are experiencing harmful encounters in a medical system where structural racism is embedded within policies, procedures, and practices. 
4. Policy, systems, and environmental gaps: Gaps in national and state policy affect how patients with SCD are treated in health care systems, which negatively impacts their quality of life. 
5. Lack of support: There is a need for more support beyond the clinical setting to address the person as a whole to address the needs of individuals with SCD that go beyond the physical complications of SCD. 
6. Educational needs: There is a need for education targeted towards the general public, the SCD community, schools, medical providers, and hospital emergency rooms to better improve care, understanding, and pain management. 
7. Research, treatment, and therapy needs: Limited research about SCD has prevented understanding of health outcomes and development of new treatments. 
8. Data gaps and needs: Due to lack of coordinated data collection and access to existing databases, there are no accurate estimations of how many individuals in Minnesota live with SCD.

Forum participants proposed recommendations to remedy the above challenges: 

• Seek dedicated funding
• Establish emergency department guidelines
• Access to and utilization of data
• Establish work groups and partnerships

Learn more about the forum: Sickle Cell Disease Stakeholder Forum (PDF)

Next steps

Many of the recommendations listed above require long-term collaboration and effort. However, MDH and MN SCC have already started implementing some of the recommendations.

As a direct result of forum findings, MDH and partners are now working on collecting data about SCD in Minnesota. Learn more about the Sickle Cell Data Collection Program.

More information

If you would like to get involved with the MN SCC, please visit Sickle Cell Foundation of Minnesota: Advocacy and Leadership Programs or email them at info@sicklecellmn.org