SENATE BILL REPORT
SB 5864
As of January 10, 2024
Title: An act relating to establishing a point of contact for any person diagnosed with a rare disease.
Brief Description: Establishing a point of contact for any person diagnosed with a rare disease.
Sponsors: Senator Fortunato.
Brief History:
Committee Activity: Health & Long Term Care: 1/12/24.
Brief Summary of Bill
  • Establishes a point of contact at the Health Care Authority for people diagnosed with a rare disease who are seeking assistance through any of agency's programs.
SENATE COMMITTEE ON HEALTH & LONG TERM CARE
Staff: Julie Tran (786-7283)
Background:

Rare Diseases. The United States Congress, in the Orphan Drug Act of 1983, defines a rare disease as a disease that affects fewer than 200,000 people in the United States. Rare diseases include genetic conditions, infections, some rare cancers, and autoimmune diseases. The National Institutes of Health estimates there are over 10,000 known rare diseases and, in the United States, rare diseases affect about 25 to 30 million Americans.

 

Health Care Authority. The Washington State Health Care Authority (HCA) is an executive branch agency led by a director appointed by the Governor.  HCA's primary duties relate to the administration of insurance benefits for state and school employees, retirees, and their dependents; administering medical assistance programs for eligible low-income residents; and overseeing cost-containment initiatives in state-purchased health care.
Summary of Bill:

The HCA Director shall establish a single point of contact at HCA to provide support to any person diagnosed with a rare disease who is seeking assistance through any of the programs administered by HCA.
Appropriation: None.
Fiscal Note: Requested on December 28, 2023.
Creates Committee/Commission/Task Force that includes Legislative members: No.
Effective Date: Ninety days after adjournment of session in which bill is passed.