The resolution emphasizes the need for increased awareness regarding rare diseases and the individuals affected by them. By designating a specific day to recognize these conditions, ACR 162 aims to mobilize state resources and public interest in supporting research and providing better access to treatment. The bill highlights that many patients struggle with delayed diagnosis, finding specialists, and lack of treatment options, which underscores the importance of raising public and legislative attention to the issue.
Assembly Concurrent Resolution No. 162 (ACR 162), introduced by Assemblymember Levine, aims to proclaim February 28, 2018, as Rare Disease Day in California. The resolution acknowledges the challenges faced by individuals suffering from rare diseases, highlighting that while there are nearly 7,000 recognized rare diseases, the collective impact is significant, affecting approximately 30 million Americans. ACR 162 serves to raise awareness about these conditions, which often receive minimal public attention despite their detrimental effects on patients' lives.
The overall sentiment surrounding ACR 162 is positive, as it promotes solidarity and support for individuals with rare diseases. It brings together patients, caregivers, medical professionals, and researchers to advocate for better resources and recognition. Legislators expressed widespread support for the resolution, indicating a collective understanding of the urgent need to address the challenges faced by those with rare diseases. The unanimous voting history, with 37 in favor and none against, reflects a strong legislative commitment to this cause.
While ACR 162 is predominantly viewed favorably, there may be underlying challenges in implementation, such as ensuring that the awareness raised translates into actionable support for affected individuals and families. The measure does not allocate specific funding or resources but instead relies on public advocacy and engagement. Furthermore, the ongoing challenge lies in the fact that rare diseases often lack the necessary attention and funding compared to more common health issues, necessitating continuous efforts beyond just creating special observances.