January 2024

CA SCDC receives funding to expand surveillance and enhance collaborations!

Hello Invaluable California Sickle Cell Stakeholders,

We are happy to announce that we received new funding to expand the SCD surveillance system over the next 5 years! This expansion targets four strategic areas, each with innovative initiatives:

Data

We're integrating new datasets like the All-Payers Claim Database and delving into additional health-related data spheres, including employment and education.

Policy

We are enhancing our capabilities to more effectively collaborate with key partners to increase utilization of SCDC data to make an impact in SCD care and policy-making.

Health Education and Outreach

We're in the process of overhauling our communication approach in order to reach a broader audience. Be on the lookout for a revamped SCDC website in the coming year!

Technical Assistance

We're excited to partner with a new SCDC grantee, Texas' Department of Public Health, to help with the successful implementation of their SCDC program.

Program Announcements + Highlights

Did you know that prior to 2010, the number of people living with SCD in California was unknown?

In 2010, the Centers for Disease Control and Prevention (CDC) began funding and supporting California and other states to develop systems of surveillance. Since then, we've helped with:

Identifying Californians with SCD

Helping identify the need for specialized and comprehensive care

Deepening our understanding of healthcare utilization and treatment options

Advocating for funding support and the establishment of new SCD clinics

Training other states funded by SCDC to lead their own programs

Publications

Common data model for sickle cell disease surveillance

This article highlights the process for establishing and maintaining a proposed common informatics infrastructure for a rare disease, starting with a common data model and identifying key data elements for public health SCD reporting.

Read the full article here

Presentations

The CDC's Sickle Cell Data Collection (SCDC) Program Summit, September 26 - 29, 2023

Medicaid Coverage Patterns in the First 3 Years: An opportunity to improve early pediatric care for SCD

Sophia Horiuchi presented on Medicaid enrollment and coverage patterns in the first three years of life among children with SCD identified by newborn screening programs.

Hematologist Encounters Among SCD Patients Enrolled in Medicaid

Catherine Carpenter presented on how often Medicaid patients with SCD received care from hematologists and other experienced providers. She also shared a geography-based exploration of access to care for adults and children with SCD.

Reflections: Outcomes of a community-based informational survey

Niani Coker shared her reflections on the creation of a survey of people living with SCD about health care access, non-health support needs, and strategies to get health information and findings from over 500 responses received.

Sickle Cell Disease among Latinx in California

Jhaqueline Valle and Carolyn Rowley from Cayenne Wellness Center & Children's Foundation presented about the data on Latinx with SCD in California and how Cayenne Wellness, a community-based organization, is reaching out to this community.

Networking California for Sickle Cell Care (NCSCC)

Our partners at NCSCC, Mary Brown and Diane Nugent, presented a walkthrough of why and how the NCSCC was started, how SCDC data was used to site the clinics, where the network is now, and where it may go in the future.

The American Public Health Association (APHA) Annual Meeting, November 2023

Mapping Sickle Cell Disease in Los Angeles County

Catherine Carpenter presented at the Community Health Planning Policy Development poster session on her research which explored how access to SCD care varied by location in Los Angeles County's Service Planning Area.

Learn more about Catherine's work here.

The American Society of Hematology (ASH) Annual Meeting, December 2023

Burden of Chronic Kidney Disease in Californians with Sickle Cell Disease

Jhaqueline Valle presented a poster on her analysis where she found that Californians with Chronic Kidney Disease (CKD) and SCD had severe restrictions in access to both hematology and nephrology care.

Learn more about Jhaqueline's presentation here

Sickle Cell Trait (SCT) and Mortality Risk: California Newborn Screening Longitudinal Follow Up of Births 1991-2013

Sophia Horiuchi also presented a poster on her analysis which included over 94,000 infants identified with SCT. This is the first study to find a higher risk of mortality for children and young adults with SCT compared to those with normal hemoglobin.

Learn more about Sophia's presentation here

Webinars

Historical Trauma: Providing Trauma Informed Care to Patients with SCD

How does historical trauma impact a patient's experience and interactions with the healthcare system?

https://attendee.gotowebinar.com/recording/1365269520698753623

The Role of Music Therapy in Sickle Cell Disease

Are you interested in learning more about music therapy interventions for persons living with SCD? We included a live music therapy intervention in this webinar!

https://attendee.gotowebinar.com/recording/7781547688051843328

California SCDC aims to improve access to healthcare, reduce health disparities, and increase awareness of the disease by providing data, conducting analyses, and communicating information to SCD partners throughout the state.

We invite you to stay tuned and welcome all questions and comments about our program here!

This work is funded by the Centers for Disease Control and Prevention, DD-23-0002 Sickle Cell Data Collection Program, Award Number NU58DD000039