Support stem cell research?


Join us, Thursday the 20th, for the first meeting of the Little Hoover Commission—which may “improve” California’s stem cell program, formerly Proposition 71– in ways we do not like!


Remember Senate Bill 1565, which thankfully was vetoed by Governor Schwarzenegger? One of its goals (which sounds good, at first) was to have an efficiency organization, the Little Hoover Commission, study the Independent Citizens Oversight Committee (ICOC), the governing board of our stem cell program, and recommend changes. 


Personally, I am a little worried about making changes in something good. That is like going into the hospital for open heart surgery—when there is nothing wrong with you. 


SB 1565 is gone, vetoed by the Governor, but the Little Hoover Commission (LHC) is going ahead anyway. They are going to study the ICOC, and see if they can come up with ways to eliminate “conflicts of interest, real or perceived”, as Senator Sheila Kuehl, sponsor of SB 1565, said at one of her hearings on the bill. (emphasis added) The LHC will suggest ways to “improve” it, and design a law to enforce their decisions.   


Conflicts of interest, of course, everyone is against. That means using your decision-making power on the board to advance yourself or your organization.


 The ICOC has careful laws to prevent that.


But “perceived” means a matter of opinion. If we try to eliminate every “conflict of interest, real or perceived”, the cure may be worse than the imagined disease.


Here is how it works.


The California stem cell program is run by a 29-member Independent Citizens Oversight Committee (ICOC). Members of that board were chosen by the Governor, Lieutenant Governor, Senate President Pro Tem, and other elected officials. 


Each board member is an expert in his or her field: deans of colleges, a Nobel Prize Laureate, patient advocate champions, heads of biomedical companies, and more.   

Because they arrive on the job fully-informed, with a depth of knowledge, they can make decisions based on many years of experience.


But, and this is precisely because they are experts, it is easy to say, hey, there is a conflict of interest, or at least the appearance of one, in every decision they make.


Suppose there is a vote needed on giving money to a stem cell project to cure paralysis at college X. The dean of college X cannot vote on that project. Only college deans Y and Z can vote on that. But what if Y and Z also have projects about paralysis at their own campuses, the knowledge discovered at College X could help them.


In some people’s eyes, that could be perceived as a conflict of interest.


But if we disqualified every board member who might indirectly benefit from the California stem cell program, we would have nobody left.


Stem cell research potentially benefits everybody on earth. People who pay medical would be glad if cure research reduced their expenses.


What would it take to remove even the perception of conflict of interest?


We could try getting rid of the patient advocates—people like Joan Samuelson, founder of the Parkinson’s Action Network– and replacing them with ideologues, people who may know nothing about stem cell research, or who might even oppose it. This was the Bush Administration’s approach: because his Bioethics Commission was stacked with critics, it was an obstruction to stem cell research, instead of a help.


Or, the Commission could be run directly by politicians.


Would it be wise to give politicians control of our stem cell research money– with the current financial crisis in Sacramento? Might they not be tempted to divert our funding to other useful purposes?


I have seen this happen. At least two state research programs were gutted of their funds. New York and Maryland had spinal cord injury research programs, one for eight million annually, the other for a million a year. Both programs had their research money sidetracked to the general fund. Today, both programs are back in action, but for years, their money was denied them, and to the best of my knowledge, it was never paid back. It was spent elsewhere, instead of on research trying to find cures for paralyzed people, like my son. That may have delayed the day when Roman “stands up from (his) wheelchair, and walks away from it forever,” in the words of the late Christopher Reeve.


Under the present leadership structure the money is going exactly where it was intended and legally required to go: to advance stem cell research.


The California stem cell program is something shining, to be treasured and protected.


As a member of the public, I am participate in this amazingly transparent and open program.  I try to attend all the meetings of the ICOC and its committees and subcommittees, and have made about 100 so far.


I’ve seen the ICOC in action, many times: they do an outstanding job. They are not a conflict of interest, but a conference of experts.


Example: the budget for facilities (labs and building construction) was $272 million. But the board figured how to increasing that money: by requiring matching funds. Any organization that wanted a grant had to come up with extra dollars on its own, and bring that to the table. This instance of expertise got California an extra $800 million, turning $272 million into $1.15 billion dollars in buying power.


 How many government programs bring in extra money like that?


The Little Hoover Commission has a very solid, even noble reason to exist: to make sure California gets the best possible use of every taxpayer nickel.


Hopefully the LHC will approach its task with an open mind. If so, they may find they agree with the other four investigations and audits of our program, all of which found the California Institute for Regenerative Medicine to be an efficient and well-run institution, doing exactly what the people of California elected it to do. 


But if you look at the agenda of the November 20th meeting*, you will see that the only two speakers representing the “Consumer Perspective” are John Simpson of Consumer Watchdog, and Jesse Reynolds of the Center for Genetics and Society.


Jesse Reynolds and John Simpson are probably the two harshest critics of our stem cell program, speaking against it again and again. If there is anything negative to be said about our program, one or both of them will almost certainly be quoted.


It is their right to speak, and to be heard; their voices are part of the democratic process.


But I object to the choice of two critics as representing the entire consumer population of California. It is my understanding both men are paid lobbyists. (There is nothing wrong with that; they could make a similar comment about me.  I work for a group called Americans for Cures Foundation, which supports stem cell research, and receive a small stipend from that organization.) But to choose such vocal critics without a balance is to ignore the 59.2% of California which voted in favor of Proposition 71.


Unfortunately, not one patient advocate is scheduled to be heard.


I called up and asked to speak, and was told that there would be room for public comment at the end of the program. I also requested to speak at the next meeting, (there will be at least two) and have not heard back if this will be permitted.


Folks, we have worked hard to make Proposition 71 into what it is today, the world’s best source of funding for stem cell research.


If changes are going to be suggested to our program, you and I should be part of the process. We need to be there at the meetings. If there are citizen committees, we should volunteer to be on them. If allowed to speak, (and I am told there will be time for public comment at the end of the hearing) we should do so.


At very least, we should be in the room.


Will you join us on November 20th, 9:00, Room 4203, State Capitol, Sacramento?


It could be more important than any of us know.






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