The Bloodline Newsletter: January 2025

Communications Corner

• GA SCDC developed a photoblog capturing the inspiring journey of a family medicine physician living with sickle cell disease (SCD).
• MI SCDC released a new visual abstract to accompany the recently published "Examining community-level social vulnerability and emergency department use for people living with sickle cell disease in Michigan," illustrating how children with SCD living in under-resourced neighborhoods are more likely to rely on emergency services.
• NC SCDC created a photoblog focusing on using community resources to support those with lived experience through the transition from pediatric to adult care. For distribution alongside the photoblog, Piedmont Health Services and Sickle Cell Agency, in partnership with Duke University School of Nursing students, have developed a Transition Notebook designed to support young adults navigating this transition. This resource equips individuals with vital information, personalized tools, and actionable steps to confidently manage their health during this critical transition.
• A CityView news article featured statements from NC SCDC Co-Principal Investigator Mariam Kayle and data from SCDC. The article discussed the difficulty of accessing comprehensive health care for those living with SCD in one of NC's highest burden counties.
• WI SCDC created a visual abstract to accompany the recently published "Acute care utilization among individuals with sickle cell disease and related cardiopulmonary and renal complications" regarding the acute care needs of SCD Warriors in Wisconsin.
• CDC has developed a visual abstract and social media toolkit to share information from the recent SCDC publication "Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together". Feel free to share and interact on social media, including these posts on X, LinkedIn, and Instagram.
• Success Stories from several SCDC states are now available via CDC's SCDC Success Stories web page. Read these stories to learn how SCDC data has helped to advance the care of and support for people with SCD.
• September was Sickle Cell Awareness Month. CDC social media accounts made a total of 18 posts during the month across X, Facebook, Instagram, and LinkedIn, garnering nearly 360,000 impressions.

In the Community

• MI SCDC Principal Investigator Dr. Sarah Reeves and Project Manager Michaella Baker attended the SCDAA-MI 2024 Sickle Cell Matters Awareness Walk held in Detroit September 14, alongside team Maize and Blue Warriors organized by Dr. Eric Scott (pediatric psychologist at Michigan Medicine and member of the MI SCDC Multidisciplinary Team). During the event, MI SCDC infographics, photoblogs, and a QR code linking to the MI SCDC website were available at the Michigan Department of Health and Human Services table for attendees. Additionally, students and staff from the University of Michigan Center for Healthcare Engineering & Patient Safety, who have been working with MI SCDC and Dr. Eric Scott in the Michigan Medicine SCD clinic since June, were present at the walk.

• Members of the WI SCDC team and their community-based organization (CBO) partner Sickle Cell Warriors of Wisconsin attended the Sickle Cell Summit 2024 to promote sickle cell awareness on September 18 in Milwaukee.
• Sickle Cell Warriors of Wisconsin had a successful inaugural "You Are Not Alone Walk to Break the Sickle Cycle" October 12, in Milwaukee. Held at the beautiful Lakeshore State Park, this special event brought together over 100 attendees and 10 incredible vendors to raise awareness and strengthen the community's support for those impacted by sickle cell. WI SCDC infographics were distributed at the Warriors resource table.

• CA SCDC hosted a webinar in November 2024 on Menstruation-Related Pain in Women with Sickle Cell Disease.
• Members of the WI SCDC team attended a local blood drive in Milwaukee to promote information about WI SCDC and sickle cell resources on November 16.

Spotlight: Mei Zhou, Georgia SCDC Senior Research Associate and Data Workgroup Member

What is your full-time role?
As a senior research associate at Georgia Health Policy Center, I specialize in working with large administrative datasets across various projects, including SCDC. I have been involved with hemoglobinopathy surveillance system work since 2010. My role covers the entire spectrum of data management for this project, from the initial stages of data collection and cleaning, through data linkage, to detailed data analysis and interpretation.

Beyond my work with SCDC, I also assist the state agency with the annual evaluation of the Georgia PeachCare program. Additionally, I perform various tasks that support Georgia Health Policy Center's Medicaid team and the Center of Excellence for Children's Behavioral Health. My experience with administrative data across these projects enables me to contribute to a broad range of initiatives aimed at enhancing healthcare access and quality for different populations.

How did you get involved with SCDC and/or sickle cell research?
I joined the sickle cell disease surveillance project at the Georgia Health Policy Center when it first started, brought on board for my expertise in data management. The initial team consisted of only three members: the principal investigator, Dr. Angie Snyder; the project manager, Jane Branscomb; and myself as the data manager. Although I came in with very little subject matter expertise in this area, I have learned a lot from the clinicians and community partners who have collaborated with us over the years.

What is your hope for SCD?
With the recent FDA-approval of gene therapies for SCD, I hope to see these treatments become more widely accessible to Medicaid recipients, who make up a significant proportion of the SCD population. Furthermore, I hope the longitudinal data collection on the outcomes of patients who receive SCD gene therapy will help reduce barriers for more states and manufacturers to adopt outcome-based contracts that will help offset costs and make these therapies more accessible.

Recent Publications

• Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together

Up-to-Data

• Updated newborn screening data for multiple SCDC states are now available on the CDC web pages, including interactive maps and graphs. Please take a look.
• CA SCDC provided data and maps to University of California, San Francisco's (UCSF) Sickle Cell Center of Excellence, supporting grant planning efforts and collaboration with UCSF Health to address the needs of individuals with SCD across the Bay Area.
• NC SCDC completed two data requests from community partners focused on understanding the healthcare needs of people with SCD in the southeastern region of the state.

Presentations & Meetings

Between September and November 2024, information from the SCDC program was delivered at eight conferences/meetings.

California's Genetic Disease Screening Program Sickle Cell Center/Hemoglobinopathy Annual Meeting, September 12, 2024

• Importance of Linked Newborn Screening data in Sickle Cell Disease Surveillance. (Jhaqueline Valle, CA SCDC)

Department of Health and Human Services (HHS) Sickle Cell Disease Summit, September 24, 2024

• Panel, Meeting Warriors Where They Are: Advancements in Access to Care (Deron Burton, CDC)

Children's Wisconsin Department of Pediatrics Justice, Equity, Diversity, and Inclusion Committee's Diversity, Equity, and Inclusion Retreat, September 24, 2024

• Social determinants of health for individuals with sickle cell disease (Amanda Brandow and Barbara Bell, WI SCDC)

NC Department of Health and Human Services, Division of Public Health—Women, Infant and Community Wellness Section Meeting, September 25, 2024

• Sickle cell data collection efforts: the NC Sickle Cell Data Collection program (Co-Principal Investigator Kayle, NC SCDC)

Sickle Cell Disease Association of America, Inc. (SCDAA) 53rd Annual National Convention, October 15–18, 2024

• Enhancing Sickle Cell Disease Management: The Steps to Better Health Toolkit (Mandip Kaur, CDC Foundation)
• Lennette Benjamin, MD Memorial Panel, Federal Partner Updates (Mary Hulihan, CDC)

American Public Health Association Annual Meeting & Expo, October 27–30, 2024

• The Disproportionate Impact of Housing Discrimination on People Living with Sickle Cell Disease (Matthew P. Smeltzer, TN SCDC)

Project RISE (Research Innovation and Scholarly Excellence) Success Forum, October 29, 2024

• Prescription Drug Monitoring Program Data Trends for Individuals with Sickle Cell Disease (James Marton, GA SCDC)

Note: The seed-funded Project RISE by Georgia State University enabled GA SCDC to expand and add five new analytical data sets, develop a joint research agenda with key stakeholders for studying SCD pain in GA, and publish three collaborative manuscripts with support and input from GA SCDC advisory committee members.

North Carolina Governor's Council for Sickle Cell Disease and Blood Disorders Meeting, November 15, 2024

• Co-Principal Investigators Mariam Kayle and Shelby Weeks and Co-Investigator Justina Williams presented an update to the council on NC SCDC findings and activities. Senator Gladys Robinson was in attendance and provided guidance on utilizing NC SCDC data to support a pending legislative budget request for sickle cell disease.

2024 SCDC Summit & Reverse Site Visit

In addition to external conferences/meetings, CDC hosted the second annual SCDC Summit in Atlanta on October 28, 2024, with 70 in-person and more than 350 virtual attendees. The summit showcased 27 presentations across various areas of SCDC's work:

• SCDC state populations and methods (8 presentations)
• Service access and utilization (7)
• Community outreach and partnerships (4)
• SCDC Success Stories (8)

The next day, CDC hosted the SCDC Reverse Site Visit (RSV) with 66 in-person and 30 virtual participants from all 16 SCDC states. Breakout sessions and state presentations focused on centering community voices, fostering mentorship between states, and preparing for SCDC Year 2 activities.

Contact

For any questions about the SCDC program, contact Mary Hulihan (ibx5@cdc.gov) or Juliet Morales (ucs2@cdc.gov).