Updates

Conferences Texas Sickle Cell State Action Plan Initiative

2023 Texas Sickle Cell State Action Plan Initiative

 

Vision: Health Equity for Individuals with Sickle Cell across Texas

Mission: To organize a dedicated coalition of key collaborators to equip and empower Texans 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 Texas to develop a comprehensive and cohesive Sickle Cell Statewide Action Plan.

Why: The average life expectancy for individuals with sickle cell disease (SCD) in Texas is well below the U.S. general and African American populations. There are not enough knowledgeable providers to adequately care for youth and adults with SCD, leading to increased emergency room visits and hospital admissions and decreased quality of life. There is a lack of community awareness about SCD and sickle cell trait (SCT) and a lack of adequate follow-up for families for whom SCT is identified through newborn screening. As a group, people with SCD experience worse health outcomes compared to other diseases and have access to fewer health resources. This lack of equity is a health disparity.

Our Response: Sickle cell advocates, providers, legislators, community-based organizations, and other key collaborators are invited to attend an in-person meeting on Friday, September 15th in Houston, TX. We will collaboratively identify public health priorities and key implementation agencies needed to improve the health of Texans affected by SCD and SCT. We will establish workgroups with the vision of creating a comprehensive and cohesive Statewide Action Plan, by July 2024, to address health disparities affecting Texans with SCD and SCT. Our goal is for providers, agencies, and the community to collaboratively implement the plan, which will articulate needed steps to ensure that individuals with SCD receive comprehensive, patient-centered, coordinated, accessible, high-quality care, no matter where they live or seek care in Texas. For SCT, we envision that the plan will outline steps for agencies to take to promote a model for SCT follow-up where individuals have access to information and counseling to make informed decisions about their reproductive health and the unique circumstances in which SCT may have an impact on their overall health status.

Join Us: Plan to join us for the in-person meeting on Friday, September 15th in Houston, TX at the NRI. Travel, lodging, and meals for non-local attendees will be covered. Please contact us if you cannot attend but would like to participate in a State Action Planning workgroup. 

REGISTER FOR THIS EVENT
The deadline to register is September 1, 2023, 6:00 pm CST
The deadline to register for non-local attendees is August 11, 2023, 6:00 pm CST

For more contact information, contact:
Titilope Fasipe, MD, PhD
Site Principal Investigator (Texas), Heartland|Southwest SCD Network
taishola@texaschildrens.org