H.R. 8067: Candis King Hope for Sickle Cell Families Act

The bill known as the Candis King Hope for Sickle Cell Families Act aims to enhance the understanding and management of sickle cell disease in the United States through several key provisions.

Data Collection Program

The bill directs the Secretary of Health and Human Services (HHS) to implement a program called the Sickle Cell Data Collection program. This program will:

• Collect and maintain data regarding the incidence (new cases) and prevalence (existing cases) of sickle cell disease in the U.S.
• Gather information about the demographics of individuals living with sickle cell disease.
• Monitor healthcare utilization patterns among these individuals.
• Provide grants to states to support the collection of this data.
• Encourage collaboration with other entities and previous programs for improved standardization of sickle cell disease surveillance methods.

Funding Authorization

The bill authorizes the appropriation of $10 million for each fiscal year from 2027 through 2031 to fund the Sickle Cell Data Collection program.

Division of Blood Disorders and Public Health Genomics

The bill also includes provisions regarding the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention (CDC). Specifically, it mandates that:

• The Secretary of HHS must reinstate any employee from this division who was removed after January 1, 2025, due to agency actions affecting employee numbers, such as layoffs or reorganizations that impacted 3% or more of the workforce over a 60-day period.

Purpose and Goals

Overall, this legislation seeks to improve the understanding of sickle cell disease, facilitate research and data-sharing, and ensure support for the workforce in the relevant public health division.

Relevant Companies

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