THE “DO-OVER” COMMISSION: California Stem Cell Program to be Re-written?
In the very near future, perhaps today, the Little Hoover Commission is going to release a catalog of “improvements” to the California stem cell program, of which they appear to know very little. Unfortunately, those recommendations have a chance of becoming law.
The hard work of years may be unraveled in this “Do-over” of our stem cell program.
But first, let me pose a seemingly unrelated question.
I know nothing about real estate, except I think houses cost too much. So, based on the fact that I have a complaint, (justified or not) should I be put in charge of making a new law on how to run the housing market?
Why not? The Little Hoover Commission (LHC) gets to do exactly that to the California stem cell program. The LHC has recently been “studying” the California Institute for Regenerative Medicine. I put the word “studying” in quotes because to the best of my knowledge two board members and one staff member attended one and perhaps two meetings of the Committee they wish to utterly change. This tiny subcommittee did appear to have read the complaints of the program’s critics; those they know well. But the positive side, the tremendous achievements of the California program, brought about by the combined intelligence of the board and chairperson, in addition to the dedicated staff? That seems to have escaped the LHC’s notice.
Wednesday and Thursday, June 24th and 25th, I drove to Sacramento, enduring four hours of traffic jam each day, to find out the plans for this panel of non-experts and our beautiful stem cell research funding program.
Interestingly, for a group dedicated to good government and transparency, the Little Hoover Commission has kept its draft report determinedly secret.
The report has gone through two drafts, and the public has not been shown either one.
What a difference from the Institution they are studying! Our stem cell program does virtually everything out in the open. At meetings, the public can give comments before the meeting, during the meeting, after the meeting—and almost all of its documents are public. When you attend, there are always stacks of documents waiting for you. Those same documents (first draft, second draft, whatever) are also available on line, at www.cirm.ca.gov.
At Little Hoover? Just the opposite. We the public were not allowed to see the document in question until it is too late to do anything about it, after they are through with it.
So, first we are denied information, the foundation of democracy.
Citizen input? That is only allowed—before the meeting is underway.
How is a person supposed to know what to respond to, at the beginning of the meeting, especially if the most important information is kept secret?
But I spoke anyway! From listening to their public conversations, I knew enough to recognize a serious threat to our program.
I made the point that California’s stem cell program was important to the nation, and that the patient advocacy community would of course defend it. I mentioned my paralyzed son, of course, and the Roman Reed law, which provided initial funding for the spinal cord treatment which goes to human trials this year.
And I even talked about football. I don’t like football much anymore, after what it did to my son. But he loves it still, and our team was the 49’ers.
So I asked the committee to remember when the San Francisco 49’ers ruled, winning four Super Bowls, led by Joe Montana, and Steve Young.
Would the LHC suggest we take away the world’s best football team and replace them with a farm team from somewhere?
That is what the LHC intends to do to the California stem cell program—take out the winning’est team there is.
They want to remove all 29 members of our board, and replace them with 15 political appointees—11 from the Governor, 2 from business and 2 from “independent scientists”.
This would be a completely politicized board.
What if a Governor did not approve of stem cell research? He could appoint 11 enemies of the research, and they could do whatever they wanted, even transferring our funds somewhere else.
How much discussion did they give such huge questions? Almost none.
Only one point was raised: of their proposed half-committee, how many members would it take to make a quorum, the minimum number of board members needed to pass a vote.? They argued about this for ten minutes—and then one of them said, “Well, how do they do it now?” Not a single commissioner could answer.
They did not know. They wanted to change the entire governing board (the ICOC or Independent Citizens Oversight Committee) and they did not even know how it worked. (The answer is 2/3 of eligible participants.) But they did not know.
The only bright spot in the proceedings came when Senator Dean Flores, (to my knowledge the only active legislator on the panel) spoke up.
He said: “If we don’t know how the governing board works, why are we in such a hurry to change it?”
“Well, because it is too big,” a board member said.
“And are you saying that big is bad?”
“Well, generally a big board is more for fundraising than decision-making,,,”
“And what do you base that on? Is there some study you can site, or is that just a value judgment on your part?”
“Well, it is just general knowledge….”
“Oh, like the Board of Regents for the UC college system, that’s 26 members? Are they too big?”
“Well, we’re not talking about them!”
Unfortunately,Senator Flores, due to the budget crisis, could only stay a few minutes.
When he left, the Commission seemed to recover from being flustered, and went on to endorse the report.
When I get the report, I will write about it.
If it becomes legislation I will naturally oppose it with every fiber of my being.
The CIRM is one of the great accomplishments of our time, and of course we will not let it sink. We will organize, local, state, and national organizations, and we will stand up for America’s greatest stem cell program. (Do I exaggerate? Last year, the CIRM provided seven times as much money for early stem cell research as the National Institutes of Health. No other program even comes close. Of course we will defend it.)
But there was one priceless moment which for me summed up the day.
The committee was served lunch. Nothing luxurious: a good sandwich, a pack of what looked like potato chips, an apple, a cookie—but as they ate, the meeting continued, because the room had to be vacated shortly.
And one board member raised her hand and said:
“Not a criticism, but I wish next time we could have more time to study the information. Five minutes and a sandwich just is not enough time, not for something so important.”