CLSA Sponsored Bill on Rare Diseases Gets Hearing in Assembly Health Committee
By Oliver Rocroi
April 19, 2019
CLSA’s sponsored bill AB 1016, authored by Assemblymember Brian Maienschein is scheduled to be heard the week of April 22 in the Assembly Health Committee. AB 1016 would establish a Rare Disease Advisory Council that would give patients a voice in state government and provide educational resources for elected leaders on critical issues related to access, coverage, and the diseases themselves.
In the United States, a rare disease is one that impacts fewer than 200,000 people. Certain rare diseases may only impact a few hundred people. The rarity of these diseases means that some people may be isolated and unable to receive support from others with the same disease.
Nearly 1 in 10 Americans have been diagnosed with a rare disease. Almost half of these individuals are children, 30% of whom won’t live to see their 5th birthday. Furthermore, 35% of deaths that occur in the first year of a child’s life are due to rare diseases.
Commonly known rare diseases include: sickle-cell anemia, amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease), cystic fibrosis, muscular dystrophies, and Huntington’s disease.
Healthcare providers are often less familiar with rare diseases and their symptoms than with more common diseases. In a 2014 survey of 1,600 physicians and nurses, 90% agreed that they need more information on rare diseases. Earlier this year, CLSA worked closely with Assemblymember Rob Bonta (D-Alameda) on an Op-Ed in the Sacramento that helped highlight the need for rare disease patient assistance and resources given the complexity of the diagnosis odyssey and ensuing journey.
CLSA has launched a digital campaign through our Action Center to help support this bill. Click here to add your name and to learn more.
Learn more about AB 1016. Questions? Please contact Oliver Rocroi, CLSA’s Vice President of State Government Relations (firstname.lastname@example.org) or Brett Johnson, CLSA’s Senior Director of Policy & Regulatory Affairs (email@example.com).