A Resolution ensuring greater access to sickle cell disease treatments and designating the Department of Health to conduct a comprehensive and coordinated data collection effort to better understand and quantify the scope and impact of sickle cell disease on patients, communities and states throughout the United States.

2025-2026 Regular Session Introduced by Johanny Cepeda-Freytiz and 11 co-sponsors

HR 302: Sickle Cell Disease Treatments and Data Collection Resolution OverviewBill Number: HR 302 Title: A Resolution ensuring greater access to sickle cell disease treatments and

Referred to Health

Overview

Bill Number: HR 302
Title: A Resolution ensuring greater access to sickle cell disease treatments and designating the Department of Health to conduct a comprehensive and coordinated data collection effort to better understand and quantify the scope and impact of sickle cell disease on patients, communities and states throughout the United States.
Status: Referred to Health
Introduced: January 09, 2025
Classification: resolution

Purpose and Intent

The primary goal of this resolution is to improve access to treatments for sickle cell disease and to establish a comprehensive data collection effort to better understand the full impact of this genetic blood disorder. Sickle cell disease disproportionately affects minority populations, particularly African Americans, and has been historically underfunded and under-researched compared to other major diseases. This resolution aims to address these disparities and ensure sickle cell patients receive the care and support they need.

Key Provisions

Directs the Department of Health and Human Services (HHS) to conduct a nationwide data collection initiative on sickle cell disease, including:

Gathering demographic, epidemiological, and clinical data on sickle cell patients
Assessing barriers to accessing quality care and treatments
Evaluating the economic and social impacts on patients, families, and communities

Requires HHS to establish new grant programs to:

Expand access to sickle cell screening, treatment, and care coordination services
Support research into new sickle cell therapies and interventions
Fund community-based sickle cell education and outreach efforts

Directs HHS to develop national guidelines and standards of care for sickle cell disease management

Affected Parties and Impacts

This resolution would primarily benefit individuals living with sickle cell disease, as well as their families and communities. It aims to improve access to essential treatments and support services, while also generating critical data to guide future policy and funding decisions. Healthcare providers, researchers, and public health officials would also be impacted through new data collection and reporting requirements.

Procedural and Timeline Considerations

HR 302 has been referred to the House Committee on Health, where it will undergo further review and potential amendments before being considered by the full House of Representatives. If passed by the House, the resolution would then move to the Senate for consideration. The data collection and grant programs outlined in the bill would likely take 12-18 months to implement once the resolution is signed into law.