New study finds sickle cell disease impacts Latinx communities in CA

November 2022

Did you know that Tracking California conducts Sickle Cell Disease (SCD) surveillance? SCD is a rare hereditary blood disease that causes devastating complications for patients and their families. People with severe SCD may die more than 20 years before their peers.

It is well known that SCD disproportionately impacts the Black community, and documented disparities in accessing and receiving quality health care have led to shorter lives and worse outcomes within this population.

Because of Tracking California's work on the California Sickle Cell Data Collection (SCDC) Program, stakeholders are using data on SCD to inform their work, improve health outcomes, and improve the quality of life for those with the disease. Our team gathers data from state agencies and health care providers to understand how many people in the state have SCD, what regions they live in, whether they have access to good care, and what their health outcomes are.

This work was spearheaded by Program Director Susan Paulukonis, who recently transitioned from her role at the end of September. We're grateful to Susan for her leadership and many accomplishments during her time at Tracking California. We are fortunate to welcome long-time SCDC researcher Jhaqueline Valle in her new role as Director of the SCDC program.

Study finds SCD impacts Latinx communities in CA

After African Americans, Hispanics/Latinx are the second largest population affected by SCD in the U.S. Yet research has largely ignored how this disease specifically affects Latinx. In the first study of its kind, Tracking California has characterized the prevalence of SCD in the Latinx community in California. Along with partners at Center for Inherited Blood Disorders, Charles R. Drew University of Medicine and Science, and networking California for Sickle Cell Care, we found that:

7% of SCD cases in CA are Latinx, and 11% of babies born with SCD in CA are Latinx

Most Latinx with SCD live in Los Angeles County, Orange County, and the Bay Area

Both Latinx and non-Latinx SCD patients rely heavily on Medicaid for health care coverage

For study details and recommendations by the authors, see our press release and the article in PLOS ONE.

Jhaqueline Valle, lead study author and Director of Tracking California's SCDC program, describes the study results and implications for the Latinx community and SCD healthcare providers (Spanish).

This analysis was funded by the Centers for Disease Control and Prevention and by Networking California for Sickle Cell Care Program, a project supported by the State of California and the California Department of Public Health as a part of SB-74 and the Budget Act of 2019.

Tracking California, formerly the California Environmental Health Tracking Program, is a program of the Public Health Institute in partnership with the California Department of Public Health. Tracking California is part of a national initiative coordinated by the National Environmental Public Health Tracking Program.

This publication was supported by the Cooperative Agreement Number NUE1EH001489, funded by the U.S. Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the U.S. Department of Health and Human Services.