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.

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.

PRO: This is a good little bill inspired by my grandson, who has a rare disease. There is a lack of understanding about the special conditions that rare diseases may have. Families and individuals with rare diseases have trouble navigating the programs, services, and resources that are available. The purpose of the bill is to have somebody that understands rare diseases and has some experience to assist these individuals. This also connects to issues with caregiver hours and the need for more hours as rare diseases is not something that is typically dealt with.