Goodbye ICOC After 17 Years

After seventeen plus years I’m finally ending my service as a member of the governing board for the California Institute of Regenerative Medicine (CIRM) called the Independent Citizen’s Oversight Committee (ICOC).  This is the state board that oversees CIRM and makes final funding decisions for grants.

I was one of the founding members of the ICOC, originally appointed to my first 8-year term by Governor Schwarzenneger as the patient advocate for spinal cord injury.  This was in December 2004 just after the passage of Proposition 71.  I was re-appointed for a second 8-year term in 2012 by Governor Brown.  After completing 2 terms in 2020, I was officially “termed out”, but continued to serve until July 2021 until Governor Newsome appointed Rich Lajara as my replacement.  

Appointing Rich Lajara is a remarkable and rewarding completion of the circle--Rich was the first participant in the clinical trial of human stem cell-derived oligodendrocyte precursors (OPCs), the candidate therapy advanced originally by the company Geron based on research at RIRC by Hans Keirstead’s team.   In fact, Rich was California’s first embryonic stem cell patient in the very first clinical trial funded by CIRM. This was a Phase 1 trial safety trial and because the therapy dose was minimal there was no expectation of recovery. The trial was successful in establishing safety, however allowing the candidate therapy to advance to further testing in clinical trials by Geron and later by the company Asterias.

It was absolutely thrilling for me to be a part of the launch of the remarkable story on Stem Cell research in California.  When I first got the call from Bob Klein regarding serving as a Patient Advocate, Bob started by telling me I wasn’t the first choice.  I knew that already because I was one of many people who had recommended Dana Reeve.  Unfortunately, however, Dana was ineligible because she wasn’t a California resident, and she recommended me for the position.  I have tried my best to live up to the amazing examples set by Dana and Chris Reeve and carry at least part of the advocacy torch that they passed on.

The first 2 years of CIRM’s existence was an adventure to say the least.  We (the governing board) had to oversee the creation of a granting agency from scratch.  We spent a lot in the first year of CIRM’s existence developing standards and mechanisms. Fortunately, we were able to recruit Zach Hall as the first President of CIRM who brought his years of service as Director of the National Institutes of Neurological Disorders and Stroke (NINDS).  Zach and Arlene Chiu, who previously was a Program Director NINDS, created the remarkable grant review and management systems that were the foundation for CIRM’s remarkable initial success.

This was also a time of legal challenges to Stem Cell research in general, Prop. 71 in particular, and the creation of CIRM itself. As a member of the ICOC, I was named as a party in a suit brought by an anonymous human embryo and one of my first responsibilities was being deposed by lawyers.  This and other legal actions delayed the actual start of CIRM’s grants program, but eventually the legal roadblocks were resolved, and CIRM began its task of supporting research to bring new treatments and cures to patients.  

Over my years of service on CIRM, I was a member and eventually co-chair of the Science Subcommittee, member of the Finance Subcommittee, Ethics Subcommittee, and served as a member of the Grants Working Group that provided the initial merit review of all grants.  

I learned a lot about California State Law (Bagley-Keene, open meeting rules, etc.) as well different definitions of conflict of interest (COI) than are familiar to faculty at universities and scientists serving on NIH review groups.  Some of the state-specific rules are more stringent (particularly with regard to open meeting rules and communications between members out of the public meeting setting).  For example, when the ICOC meets via Zoom, chat functions are disabled because we are not allowed to have conversations out of the public eye.  

I was responsible for one small thing regarding sensitivity that has endured.  Every in person meeting of the ICOC begins with the “Pledge of Allegiance”.  At one of the very first meetings, Melissa King began this by asking everyone to stand.  I pulled her aside later and suggested that she say instead “please stand if able”. Melissa and later Maria Bonneville have continued this practice for every subsequent meeting of the ICOC.  By the way, this practice was something I learned by example from Naomi Kleitman, formerly of the Miami Project and now Senior Vice President at the Craig H. Neilsen Foundation.  

The greatest pleasure of serving was getting to know the other remarkable individuals who were members of the ICOC and in that regard, I want to recognize all of the other original Patient Advocates by name.

• Sherry Lansing (cancer)
• Francisco Prieto, M.D. (cardiovascular disease)
• Joan Samuelson (Parkinson’s disease)
• David Serrano-Sewell (multiple sclerosis)
• Jeff Sheehy (HIV-Aids)
• Johnathan Shestak (developmental disorders)
• Leon Thal (Ph.D.) (Alzheimer’s disease)
• And of course Bob Klein (diabetes)

There were also a huge number of “patient advocates without portfolio”, especially Don Reed, who has played an amazing role for the entire history of CIRM.

One downside about serving on the ICOC has been that for the entire time that CIRM has been in existence, I have been ineligible to apply for any CIRM funding.  Hmm, have to see about that going forward…