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119-s-5488119th CongressWALLET

Sickle Cell Disease Treatment Centers Act of 2026

Sponsored By: Senator Van Hollen, Chris [D-MD]

Introduced

Summary

This bill would create a federal grant program to expand access to comprehensive Sickle Cell Disease care through regional hub-and-spoke Treatment Centers. It would also establish a National Sickle Cell Disease Coordinating Center and a CDC SCD Data Collection Program to track outcomes and reduce disparities.

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  • Families and patients: Would fund coordinated care that covers telehealth, genetic counseling, home-based care, pediatric-to-adult transition programs, and help with insurance, cost-sharing, and travel costs for in-person visits.
  • Providers, community groups, and local clinics: Would require hub-and-spoke networks that include at least one medical hub and one spoke, integrate community health workers on spokes, and fund provider and school staff education and quality improvement.
  • National coordination and data: Would create a National Sickle Cell Disease Coordinating Center to support grantees and public education and a CDC SCD Data Collection Program to monitor prevalence, treatments, and disparities; the bill would require a Request for Information within 180 days and a report to Congress within 3 years.

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Bill Overview

Analyzed Economic Effects

5 provisions identified: 4 benefits, 1 costs, 0 mixed.

New sickle cell treatment grants

If enacted, HHS would award grants to create Sickle Cell Disease Treatment Centers organized as hub-and-spoke networks. Applicants would need a medical hub, at least one spoke, and at least one community nonprofit. Grants would fund coordinated lifelong care, smoother pediatric-to-adult transitions, provider training, and data collection. Grant money could also help patients with insurance access, premiums or cost-sharing where allowed, transportation or travel reimbursement, telehealth access, and genetic testing and counseling.

National coordinating and data programs

If enacted, HHS would establish a National Sickle Cell Disease Coordinating Center to advise the agency, harmonize grantee activities, offer technical help, and run a rotating stakeholder advisory panel. The CDC would run a Sickle Cell Disease Data Collection Program in coordination with the Center to track disease subtypes, outcomes, geographic patterns, disparities, therapy use, and migrant and foreign-born patients. Both programs would develop and share best practices and outreach materials.

Program funding and allocation rules

If enacted, the bill would authorize such sums as may be necessary to fund the program starting in fiscal year 2027. Of any money Congress provides each year, 70% would go to hub-and-spoke network activities, 20% to community-based organizations, 5% to a National Coordinating Center, and 5% to the CDC data program. Actual funding would still depend on annual congressional appropriations.

Reporting and stakeholder input rules

If enacted, HHS would publish a request for information within 180 days after enactment and before each grant cycle to get stakeholder input. The Secretary would also report to Congress no later than 3 years after enactment and every 5 years after that on grantees, activities funded, numbers and demographics of patients served, and patient experiences.

New rules for spoke providers

If enacted, the bill would define a 'spoke' as a provider that must have at least one collaborative agreement with a medical hub and a community nonprofit. Each spoke would have to include a community health worker on the care team. The bill would also require grant-funded activities to supplement, and not supplant, existing HHS sickle cell programs. These rules would create new administrative and staffing obligations for participating providers.

Sponsors & CoSponsors

Sponsor

Van Hollen, Chris [D-MD]

MD • D

Cosponsors

  • Sen. Booker, Cory A. [D-NJ]

    NJ • D

    Sponsored 9/23/2026

  • Sen. Klobuchar, Amy [D-MN]

    MN • D

    Sponsored 9/23/2026

Roll Call Votes

No roll call votes available for this bill.

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