The Bloodline Newsletter: July 2024

Purpose

Mission: To improve quality of life, life expectancy, and health among those living with SCD

Communications Corner

  • CA SCDC released an infographic on their SCDC program.
  • HCPLive featured a recent publication of GA SCDC 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 SCDC developed a visual abstract 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 SCDC 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.

L to R: Janelle Highland, Ashima Singh, Rae Blaylark, Annie J. Ross-Womack, Tokara Henry, Talana Hughes, Nicole Steiner, Allison Remiker and Melissa Azul
L to R: Janelle Highland, Ashima Singh, Rae Blaylark, Annie J. Ross-Womack, Tokara Henry, Talana Hughes, Nicole Steiner, Allison Remiker and Melissa Azul

Recent Publications

Up-to-Data

  • GA SCDC 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 SCDC 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 SCDC 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 SCDC Community Outreach Workgroup Coordinator

What's your full-time job?

I'm a medical research specialist coordinating various special projects, including the TX SCDC Program. Beyond SCDC 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!

Victoria Salinas, TX SCDC
Victoria Salinas, TX SCDC

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 SCDC, what was your knowledge of SCD?

While my initial knowledge of sickle cell was limited, my involvement with SCDC has opened numerous opportunities for learning and service! Since joining SCDC, 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 SCDC. 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, SCDC states delivered presentations at 14 different conferences/meetings.

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

  • “California SCD and SCDC Updates” (CA SCDC Team)

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

2024 National Networks of Public Health Institutions Conference

  • “Promoting Bi-directional Learning for Evaluation, Communication and Dissemination of Data” (Crysta McGee, Mandip Kaur, CDC Foundation SCDC)
Crysta McGee and Mandip Kaur
Crysta McGee and Mandip Kaur

2024 Public Health Conference

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

2024 SCD Policy Forum

  • “Sickle Cell Data Collection Program” (Mary Hulihan, CDC SCDC)

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

  • “Sickle Cell Data Collection Program” (Mary Hulihan, CDC SCDC)

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

  • “Sickle Cell Data Collection Program” (Deron Burton, CDC SCDC)

Duke-Margolis Seminar in Health Policy and Management

  • “SCDC overview and recent findings” (Mariam Kayle, NC SCDC)

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

  • “Overview of NC SCDC Efforts” (Shelby Weeks, NC SCDC)

MDHHS Public Health Administration Epidemiology Seminar Series

  • “MI SCDC Work on COVID 19 Vaccinations” (Hannah Peng, MI SCDC)
  • “Overview of MI SCDC Program” (Sarah Reeves and Michaella Baker, MI SCDC)
L to R: Sarah Reeves, Samyuktha (Simi) Neeluru, Michaella Baker
L to R: Sarah Reeves, Samyuktha (Simi) Neeluru, Michaella Baker

Michigan Public Health Association 2024 Epidemiology Conference

  • “Epidemiology of Sickle Cell Disease in Michigan, 2020” (Krista Latta, presented on her behalf by Michaella Baker, MI SCDC)
  • “State-University Partnership to Implement Public Health Surveillance for Sickle Cell Disease in Michigan” (Michaella Baker, MI SCDC)

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 SCDC)
  • “Changes in Hydroxyurea Adherence During the COVID 19 Pandemic among Children and Young Adults with Sickle Cell Disease” (Melinda Rushing, MI SCDC)

Sickle Cell Therapeutics Summit

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

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 SCDC)
  • “Availability of Transportation to Medical Appointments for Children and Young Adults Living with Sickle Cell Disease in Michigan” (Samyuktha [Simi] Neeluru, MI SCDC)

Announcements

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

Contact

For any questions about the SCDC program, contact Mary Hulihan (ibx5@cdc.gov) or Crysta McGee (rgl0@cdc.gov).

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Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)