The Children’s Rare Disease Network and Global Genes Project had the opportunity to represent rare disease patient advocates at the California State Capital on Tuesday, March 24 at California Life Sciences Day 2009. The event was organized by our friends at the California HealthCare Institute (CHI), BayBio and BIOCOM.
There were approximately 145 delegates that participated throughout the day, representing various contingencies including biotech, medical devices, venture capital, patient advocacy and academia. Small groups were assembled to meet with various state legislators to discuss topics ranging from bio-agriculture and bio-fuels, budget and tax policy, education and workforce development, environmental regulation, healthcare coverage and reimbursement, healthcare disparities and intellectual property and innovation.
Nicole Boice, founder and CEO of CRDN and Chris Hempel, rare disease parent advocate and advisory board member of CRDN, had the honor of being part of one of the Life Science Day teams. Our group met with state legislators and staff members to educate them on the value of the biotech industry and its economic impact on the state and how cutting edge products being produced by biotechs can impact the quality of life of millions of patients.
Our core group consisted of Dr. David Gollaher, CEO of California Healthcare Institute (CHI), Dr. Susan Baxter of the California State University System, Walter Cuevas, CEO of medical device maker Interventional Spine, Joel Martin, Avant BioVentures and Dr. George Scangos, CEO of Exelixis, a biotech firm producing innovative cancer treatments.
Our group has meetings with the following state government officials and/or their staff:

  • Assemblyman Dave Jones – Chair, Assembly Health Committee
  • Senator Dennis Hollingsworth – Senate Minority Leader
  • Speaker of the Assembly – Karen Bass
  • Senator Gloria Negrete-McLeod – Chair, Senate Business and Professions Committee
  • Herb Schultz, Senior Advisor to the Governor
  • Richard Figueroa, Deputy Cabinet Secretary to the Governor
  • Senator Elaine Kontominas Alquist – Chair, Senate Committee on Health

All the individuals we met with seemed very committed to the biotech community and were interested in finding solutions for the current economic crisis that is having a direct impact on the biotech community. It was clear that most of them understand the economic importance of biotech companies to the State of California and the industry’s impact on global health.
Industry Highlights

  • California is home to more that 2,000 companies and more 100 universities and private non-profit research organizations that are engaged in biomedical R&D manufacturing
  • The state’s biomedical industry accounts for 271,000 jobs 2007
  • More than $28.1 billion has been invested in research and development of new products for unmet medical needs in 2007
  • There are almost 900 new medicines in California’s pipeline, with 51% being evaluated in clinical trials. About 32% of the products are targeting cancer
  • California received the greatest amount of NIH funding of any state totaling $3.16 billion in 2007