California Assembly Bill AR70

California 2023-2024 Regular Session

• Introduced: 2/15/24
• Refer: 2/20/24
• Passed: 2/29/24

Caption

Relative to Rare Disease Day.

Impact

The resolution seeks to shine a light on the issues surrounding rare diseases, which include diagnosis delays, difficulties in accessing medical expertise, and treatment availability. By declaring a specific day dedicated to rare diseases, the bill aims to foster increased public awareness and advocacy for better research funding and support systems. This recognition may prompt legislative initiatives and health policy considerations to address the needs of this vulnerable population.

Summary

House Resolution 70 (AR70), introduced by Assembly Member Maienschein, aims to proclaim February 29, 2024, as Rare Disease Day in California. The resolution recognizes the significant impact that rare diseases—affecting nearly 30 million Americans—have on individuals and families, highlighting the challenges faced by those diagnosed with conditions that are often serious and debilitating. It emphasizes the severe lack of approved treatments for many of these diseases, despite the existence of over 600 FDA-approved drugs and biologics for rare diseases.

Contention

While there may not be significant contention surrounding the bill itself, the underlying issues it addresses—such as access to adequate healthcare and the necessity for research into rare diseases—could stir debates among legislators and stakeholders in the healthcare industry. Advocates for rare disease research may clash with budgetary concerns or differing priorities within the state's legislative agenda. However, the non-controversial nature of proclamations like Rare Disease Day often facilitates bipartisan support.