Stem cell agency has pumped nearly $1 billion into neuro disease research

During the last 16 years, California’s stem cell agency poured $975 million into its search for cures and treatments for neuro diseases ranging from brain cancer to epilepsy, according to figures made public for the first time yesterday.

The expenditures were laid out online by the $12 billion California Institute for Regenerative Medicine (CIRM), as the state’s stem cell and gene therapy program is officially known. However, the impact of the research spending was not discussed in the portfolio presentation, which involved only numbers. That may be discussed at a meeting next Wednesday.

The 18-year-old agency has not yet funded a stem cell or gene therapy that is available to the general public. Its grants now total $3.6 billion, which includes research, buildings and other non-research awards. CIRM has about $4 billion left to spend on research and other awards, an amount that is likely to run out in about nine years.

CIRM has never engaged in a public analysis of its scientific portfolio. It is unclear whether it has done so privately, but no discussion of such an analysis has surfaced in public, based on the 18 years of coverage of the agency by the California Stem Cell Report.

The neuro disease figures were developed as the result of questions raised by its directors’ neuro disease task force and CIRM staff. The panel was created last January to help fulfill a 2020 voter mandate that CIRM spend at least $1.5 billion on neuro disease research.

Since 2020, when voters refinanced CIRM with $5.5 billion, the agency has awarded $221 million for neuro disease research. Just last month CIRM approved a $111 million plan to look into mechanisms of neuropsychiatric diseases. Those awards will begin next year.

The neuro task force, chaired by CIRM Director Larry Goldstein, is scheduled to meet next Wednesday morning (October 18^th) to discuss the spending. The group is charged with devising an overall funding approach for the $1.5 billion.  The task force is facing such questions as:

Do opportunities exist for generating high-impact research results?

Should CIRM focus on diseases with “high burdens?”

Should the agency emphasize research whose results will cut across multiple diseases?

The task force posted those and other fundamental questions on its agenda on Oct. 6 but failed to provide any of the important background information until Friday Oct. 13, just days before the task force meeting. So far only the portfolio spending information has been posted.

The laggard availability of background material makes it difficult for directors and the public to thoroughly review the important topics and plan attendance at the meeting.

The task force meeting is open to the public. Comments can be made ahead of the meeting by emailing them to [email protected]. The task force can be addressed directly during the meeting (see agenda), but the time allotted is skimpy and likely to be cut off for the scheduled adjournment.

David Jensen is a retired newspaper editor and has written about the state stem cell agency since 2005 in his newsletter, The California Stem Cell Report, from which this story was reprinted with his permission.  He is also the author of the book, “California’s Great Stem Cell Experiment.”