Missouri Sickle Cell Disease State Action Planning Initiative 

Mission

To organize a dedicated coalition of key collaborators to equip and empower Missourians about sickle cell disease and trait to improve statewide disease awareness, education, and evidence-based care delivery. 

Who

A coalition of key collaborators, under the leadership of the HRSA funded Heartland|Southwest Sickle Cell Disease Network, will come together to establish goals and activities for sickle cell disease awareness, education, and care delivery across Missouri to develop a comprehensive and cohesive Sickle Cell Statewide Action Plan by August, 2023. 

Kick-Off Meeting on September 9th, 2022 

Individuals with SCD, family members, providers, legislators, community-based organizations, advocates, and other key collaborators are invited to attend an in-person meeting on Friday, September 9th at Washington University School of Medicine. 

The meeting will serve as a kick-off and vision casting to initiate a year long process to develop a comprehensive and cohesive State Action Plan for Sickle Cell Disease and Trait. We envision the Action Plan to be a roadmap that will transform healthcare delivery, access to, and cost effectiveness of care for Missourians with sickle cell disease. We will establish workgroups to meet regularly for a year with the goal of developing a written Action Plan by August, 2023.

The goal is for providers, agencies, and the community to collaboratively implement the plan, which will articulate needed steps to ensure that individuals with sickle cell disease receive comprehensive, patient-centered, coordinated, accessible, high-quality care no matter where they live or seek care in Missouri, For sickle cell trait, we envision that the plan will outline steps for agencies to take to promote a model for sickle cell trait follow-up where individuals have access to information and counseling to make informed decisions about their reproductive health and the unique circumstances in which sickle cell trait may have an impact on their overall health status. 

If you are interested in attending the kick-off meeting on September 9th and/or participating in workgroups throughout the year to develop a State Action Plan, please email Taniya Varughese at easowt@wustl.edu