H.R. 5178: Sickle Cell Disease Comprehensive Care Act

This bill, titled the Sickle Cell Disease Comprehensive Care Act, aims to enhance the provision of healthcare for individuals with sickle cell disease by enabling State Medicaid programs to create "health homes" specifically designed for them. Here's a breakdown of what the bill proposes:

Key Provisions

• Expansion of Health Home Services: Beginning January 1, 2026, state Medicaid programs can provide comprehensive health home services to eligible individuals with sickle cell disease. This addition allows for specialized care management for those affected by this condition.
• Dental and Vision Services: States that implement a health home for sickle cell disease will be required to provide dental and vision services to their Medicaid beneficiaries with sickle cell disease. This requirement is irrespective of whether the state offers these services to other Medicaid recipients.
• Reporting Requirements: States using the sickle cell disease-focused health home model must submit reports to the Secretary of Health and Human Services every eight fiscal quarters. These reports will detail the:
  • The quality of healthcare provided to sickle cell patients, focusing on treatment outcomes.
  • The accessibility of healthcare for these individuals.
  • The total healthcare expenditures incurred by these patients.
• Quality Measures: The Secretary will define specific measures to assess the quality of care, accessibility, and expenditures for individuals enrolled in these health homes.
• Best Practices Publication: By June 30, 2026, the Secretary will publish best practices for establishing and managing health homes for sickle cell disease, developed in collaboration with medical experts and advocacy organizations.
• Eligibility Criteria: An eligible individual with sickle cell disease is defined as someone who is:
  • Eligible for Medicaid under the state plan or a waiver.
  • Confirmed to have sickle cell disease through screening or genetic testing.
  • May or may not have accessed health home services in the past.
• Definition of Sickle Cell Disease: The bill clarifies that sickle cell disease is an inherited blood disorder caused by inheriting sickle cell genes from both parents, which can be identified through newborn screening or genetic tests.

Implications of the Bill

The passage of this bill would create a structured approach for Medicaid services tailored to individuals with sickle cell disease, ensuring they receive coordinated care and additional services that are often crucial to managing their health effectively.

Relevant Companies