01/17/2013 01:14 pm ET Updated Mar 19, 2013

The California Stem Cell Program: Attacked and Defended

Few institutions are more beloved -- and more often attacked -- than the California stem cell research program, the California Institute for Regenerative Medicine (CIRM).

For patient advocates like my paralyzed son Roman Reed and myself, the $6 billion program is like nothing else on earth: an institute solely designed to bring cure to chronic conditions, often called incurable. Every time I attend a CIRM public meeting, I feel a sense of disbelief, that California was able to make this happen.

Not without opposition! Lawsuits from the Religious Right tried to shut it down; opponents of "big government" wrote countless op-ed pieces opposing our program -- well-meaning legislators tried to micromanage it. A small cottage industry of critics emerged: a mixed blessing. The same endlessly-quoted handful of folks offer constant negativity, but also suggestions for improvement, some of which have been adopted.

The most recent threat comes in the form of a study: "Committee on a Review of the California Institute for Regenerative Medicine (CIRM): Health Sciences Policy; Institute of Medicine."

While lacking power in itself, the study could become the basis for a new law to revise and redo the California stem cell program, in defiance of the voters' will.

The study begins politely enough, complimenting CIRM: "... enhances California's position as key international hub of activity... enriching regenerative medicine everywhere... impressive research portfolio... exemplary training program... translational projects (ready) for industry involvement."

Unfortunately, the study then recommends radical surgery! The proposed "improvements" would not only overturn the program's structure, but might even violate state law. CIRM is in our state constitution.

The study objects to the program's board of directors, the Independent Citizens Oversight Committee (ICOC), a 29-member panel of experts, appointed by public officials. These board members, the study believes, have an automatic conflict of interest, meaning they could use their votes to benefit the colleges or businesses for which they work.

"They make proposals to themselves, essentially, regarding what should be funded. They cannot exert independent oversight," said Harold Shapiro, chair of the study.

This is provably false.

Members of the ICOC may NEVER "make proposals to themselves." They are prevented by law from so doing: board members may neither discuss nor vote on projects which could benefit their parent organizations.

Here is what actually happens.

First, California scientists offer their proposals. These are evaluated by the Grants Working Group, (GWG), a panel with a majority of out-of-state stem cell experts.

Each project is scored, from 1-100. The grant proposals fall into three categories: essentially YES, MAYBE, and NO.

At a public hearing, the projects are listed in order of scoring, on a big screen in the auditorium. The various grant proposals are also divided by color, so it is easy to tell which is recommended for funding.

The board has read the proposals, posted on the public CIRM website. They have been reminded which projects they may not discuss.

The chairperson asks: "Does anyone want to move a proposal up or down?"

In most of the cases, probably 90 percent, the ICOC agrees with the recommendations.

But if a board member challenges the placement of a grant, then the CIRM's scientific staff will give its opinions, pro or con. The scientist applying for the grant may also speak. The board makes comments, as do we in the public -- our only chance to do so.

Example: a recent disease team proposal was offered -- a new way to fight Alzheimer's disease with its terrible memory loss.

It was a major grant, a $20-million project by Stem Cells, Inc., led by Dr. Frank LaFerla of UC Irvine. It had been rejected by the Grants Working Group. But I had studied the proposal and it seemed groundbreaking; the scientists had achieved unprecedented memory return in the laboratory mice. So, in the three minutes allowed me (as for any member of the public) I argued in support.

The debate lasted an intense 45 minutes. When all sides had been heard, the chair called for a vote by the board. One by one they declared themselves: those who were eligible.

When the votes were counted, the Alzheimer's project had won. It is going forward today. Will it work? I don't know. But we are going to find out.

To me, this is America at our best: everybody having their say -- the board, the scientists, the patients, the public, transparent government, out in the open, no secrecy.

Unfortunately, this is what the study would destroy. According to Section 3, page 11, "The board... should not be involved in day-to-day management. (It) should delegate day-to-day management responsibilities to the President... "

What do they mean by "Day-to-day management"? Nothing less than who gets the money. Giving grants for stem cell research is not trivial housekeeping; it is our whole program. Take that away from the board, and they might as well go home.

And who does the study suggest should now make these crucial decisions, instead of our 29-member board, interacting with scientists, staff, patient advocates and the public?

Two people would be in charge, one of whom works for the other. According to Section 4, page 18: "The Senior Vice President and the President... decide on a final slate of proposals to submit to the ICOC for a 'yes' or 'no' vote on the entire slate... the ICOC (Board)... should NOT (emphasis added) be empowered to evaluate individual applications... "

A "yes" or "no" vote on the entire slate?

If the Board can only make a blanket decision on several dozen projects at once, all the research projects going forward or none of them -- what kind of choice is that? Are they going to say NO, and block all the research?

Instead of our open process, funding decisions would be made in private; the public would be denied meaningful participation: and our Board reduced to a rubber stamp.

Wednesday, Jan. 23, is an all-day workshop (10:30 a.m. to 6 p.m.) to consider the IOM study. To attend, come to the Claremont Hotel, 41 Tunnel Road, Berkeley, CA 94705. Or listen to the audiocast at (800) 700-7784. Participant Access Code: 279280

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