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Communications Corner

• CA SÐÇ¿ÕÓéÀÖ¹ÙÍø developed an infographic about .

• CA SÐÇ¿ÕÓéÀÖ¹ÙÍø released an on their SÐÇ¿ÕÓéÀÖ¹ÙÍø program.

• MN SÐÇ¿ÕÓéÀÖ¹ÙÍø developed an infographic titled "."

• featured a recent publication of GA SÐÇ¿ÕÓéÀÖ¹ÙÍø showing no concerning patterns of prolonged or increasing opioid use among children with SCD (not previously exposed to opioids) within a 3-year period following the initial opioid prescription.

• MI SÐÇ¿ÕÓéÀÖ¹ÙÍø developed a for a recent publication about COVID-19 immunization rates in people with SCD compared to people without SCD in the state.

In The Community

WI SÐÇ¿ÕÓéÀÖ¹ÙÍø attended a meeting on May 17 organized by its partner community-based organization (CBO) Sickle Cell Warriors of Wisconsin. Discussions centered around building community partnerships with regional partners Sickle Cell Foundation of Minnesota, Sickle Cell Disease Association of Illinois, and Ohio Sickle Cell and Health Association.

Recent Publications

• Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability — Sickle Cell Data Collection Program, 11 States, 2016–2020

Up-to-Data

• GA SÐÇ¿ÕÓéÀÖ¹ÙÍø provided data to a CBO in GA to help identify areas of need and explore opportunities for outreach, education and allocation of resources where needed.

• MI SÐÇ¿ÕÓéÀÖ¹ÙÍø continues to provide analytic support for the Michigan Department of Health and Human Services (MDHHS). MDHHS kicked off a new initiative to develop a 5-year public health strategic plan to address sickle cell disease. MI SÐÇ¿ÕÓéÀÖ¹ÙÍø data will be leveraged to inform the strategic plan, projected for release on June 19, 2025, in recognition of World Sickle Cell Day.

Spotlight: Victoria Salinas, Texas SÐÇ¿ÕÓéÀÖ¹ÙÍø Community Outreach Workgroup Coordinator

What's your full-time job?

I'm a medical research specialist coordinating various special projects, including the TX SÐÇ¿ÕÓéÀÖ¹ÙÍø Program. Beyond SÐÇ¿ÕÓéÀÖ¹ÙÍø activities, I also lead a team in linking and analyzing stored newborn dried blood spots data, supporting analyses of National Birth Defects Prevention Study data, and coordinating our state's wastewater monitoring program. My days are never boring!

What makes you feel alive lately?

I recently started ceramics class at the Carver Community Cultural Center in San Antonio—not only has it been super fun, but I'm also learning to embrace spontaneity while exploring self-expression!

Before you started working on SÐÇ¿ÕÓéÀÖ¹ÙÍø, what was your knowledge of SCD?

While my initial knowledge of sickle cell was limited, my involvement with SÐÇ¿ÕÓéÀÖ¹ÙÍø has opened numerous opportunities for learning and service! Since joining SÐÇ¿ÕÓéÀÖ¹ÙÍø, I've had the privilege of learning from and collaborating with dedicated individuals from Texas Sickle Cell Action Plan Initiative, Texas Sickle Cell Task Force, and Texas Newborn Screening Advisory Committee. I also extend my heartfelt gratitude to our multidisciplinary team members, whose invaluable insights have been instrumental in driving the implementation of TX SÐÇ¿ÕÓéÀÖ¹ÙÍø. I'm thrilled to collaborate within a community that shares an unwavering passion and commitment to enhancing the lives of individuals with sickle cell, not only in Texas but across the nation.

Presentations

Between February and May 2024, SÐÇ¿ÕÓéÀÖ¹ÙÍø states delivered presentations at 14 different conferences/meetings.

10th Annual Government Partners Meeting: SCD in Regions 6, 8, 9 & 10

• “California SCD and SÐÇ¿ÕÓéÀÖ¹ÙÍø Updates” (CA SÐÇ¿ÕÓéÀÖ¹ÙÍø Team)

16th Annual Susan B. Meister Lecture in Child Health Policy

• “” (Melinda Rushing, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)
• “” (Samyuktha [Simi] Neeluru, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)

2024 National Networks of Public Health Institutions Conference

• “Promoting Bi-directional Learning for Evaluation, Communication and Dissemination of Data” (Crysta McGee, Mandip Kaur, ÐÇ¿ÕÓéÀÖ¹ÙÍø Foundation SÐÇ¿ÕÓéÀÖ¹ÙÍø)

2024 Public Health Conference

• “Continuity of Acute Care Among Individuals with Sickle Cell Disease in Wisconsin” (Ashima Singh, WI SÐÇ¿ÕÓéÀÖ¹ÙÍø)

2024 SCD Policy Forum

• “Sickle Cell Data Collection Program” (Mary Hulihan, ÐÇ¿ÕÓéÀÖ¹ÙÍø SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Association of Maternal and Child Health Programs (AMCHP) Annual Conference 2024

• “Sickle Cell Data Collection Program” (Mary Hulihan, ÐÇ¿ÕÓéÀÖ¹ÙÍø SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Congressional Briefing on Comprehensive SCD Care for Maternal and Child Health Populations

• “Sickle Cell Data Collection Program” (Deron Burton, ÐÇ¿ÕÓéÀÖ¹ÙÍø SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Duke-Margolis Seminar in Health Policy and Management

• “SÐÇ¿ÕÓéÀÖ¹ÙÍø overview and recent findings” (Mariam Kayle, NC SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Governor’s NC Appointed Council on Sickle Cell Disease and Other Blood Disorders

• “Overview of NC SÐÇ¿ÕÓéÀÖ¹ÙÍø Efforts” (Shelby Weeks, NC SÐÇ¿ÕÓéÀÖ¹ÙÍø)

MDHHS Public Health Administration Epidemiology Seminar Series

• “MI SÐÇ¿ÕÓéÀÖ¹ÙÍø Work on COVID 19 Vaccinations” (Hannah Peng, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)
• “Overview of MI SÐÇ¿ÕÓéÀÖ¹ÙÍø Program” (Sarah Reeves and Michaella Baker, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Michigan Public Health Association 2024 Epidemiology Conference

• “” (Krista Latta, presented on her behalf by Michaella Baker, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)
• “State-University Partnership to Implement Public Health Surveillance for Sickle Cell Disease in Michigan” (Michaella Baker, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Pediatric Academic Societies Meeting 2024

• “Availability of Transportation to Medical Appointments for Children and Young Adults Living with Sickle Cell Disease in Michigan” (Samyuktha [Simi] Neeluru, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)
• “Changes in Hydroxyurea Adherence During the COVID 19 Pandemic among Children and Young Adults with Sickle Cell Disease” (Melinda Rushing, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Sickle Cell Therapeutics Summit

• "Sickle Cell Disease Data: Value for Patients, Healthcare Providers and Public Health" (Angela Snyder, GA SÐÇ¿ÕÓéÀÖ¹ÙÍø)

University of Michigan Department of Pediatrics 2024 Pediatric Research Symposium

• “Changes in Hydroxyurea Adherence During the COVID 19 Pandemic among Children and Young Adults with Sickle Cell Disease” (Melinda Rushing, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)
• “Availability of Transportation to Medical Appointments for Children and Young Adults Living with Sickle Cell Disease in Michigan” (Samyuktha [Simi] Neeluru, MI SÐÇ¿ÕÓéÀÖ¹ÙÍø)

Announcements

Save the date for the Sickle Cell Data Collection Summit October 28, 2024!

Contact

For any questions about the SÐÇ¿ÕÓéÀÖ¹ÙÍø program, contact Mary Hulihan ([email protected]) or Crysta McGee ([email protected]).