DO WE SUE TO PROTECT THE CALIFORNIA STEM CELL PROGRAM?
We had the Appropriations Committee hearing Wednesday, in Sacramento, and (as expected) we lost, big time. SB 1565 passed without a single dissenting vote.
Part of it was of course Senator Kuehl's personal charm. As usual, co-author Senator Runner did not speak at all; his enmity to embryonic stem cell research and Prop 71 is too well-known to pretend he is there to help it—but it is impossible to dislike Ms. Kuehl. Even when I was sitting at the table for the speakers, (and I knew she was there to legislatively hand me my head on a plate) my emotion was, how nice to see her!
The Senator had at least half the audience there in support (they wore t-shirts saying support universal health care, a t-shirt I would cheerfully wear) of her six bills she presented that day. They roared their approval when her name was mentioned—the chair of the committee, Mark Leno, had to remind the audience that they were not allowed to do that—but the point had been made.
She spoke, briefly.
Bob Klein spoke, explaining things with his usual blend of passion and rationality.
He said: "We have to keep the faith of this initiative that the voters gave, expertise to deliver to patients."
I spoke too, my usual bullet points, short and plain, mentioning, for example, that not one stem cell group supported SB 1565, while opposing it was the largest collection of stem cell research support groups, the Coalition for the Advancement of Medical Research (CAMR), a group of more than 80 medical, scientific, and educational groups.
The committee listened politely. Chairman Mark Leno was gracious, gave us more time than he was required to--
And we did not have a chance in Hell.
I kept thinking, I am missing something. It is right in front of me, plain as day, and I am missing it.
The committee was just waiting until we were through so they could vote against us.
Why? The majority definitely supported the research. (With the possible exception of Assemblymember Sharon Runner, who I believe is Senator George Runner's wife—can you imagine the shouts of "Conflict of interest!" if a husband wife team worked together on our stem cell program?)
So why would they be so eager to pass SB 1565, which would definitely hurt the California stem cell program?
I knew our side was correct on the issues.
The reason given for the legislation was a non-issue in the first place. Nobody disagreed that uninsured Californians should have access to products developed by the CIRM (California Institute for Regenerative Medicine)—every CIRM-funded organization with a product has to provide an access plan before any of their stuff hits the market. Even the legislative analysts of Senator Kuehl's own committee (she is chair of the Senate Health Committee) agreed with us that the CIRM had made provisions "similar to 1565".
The request for the Little Hoover Commission (LHC) to study the governing body of the program? That was also unnecessary. The LHC can study the program (and recommend legislation to correct whatever faults it may find) without the need for legislation.
And as for the amendment Senator Runner had inserted into the bill, removing California's stated preference for embryonic stem cell research? That was not only counter to the will of the voters, but may also be illegal.
I base that argument on two points. First, the Runner Amendment goes against specific language in Prop. 71, which states:
"Sec. 3 Purpose and intent:
"It is the intent of the people of California in enacting this measure to…. Maximize the use of research funds by giving priority to stem cell research…opportuniti
The California program gives preference to embryonic stem cell research precisely because of the opposition of political ideologues in Washington. The Bush Administration prefers adult or alternative stem cell research—and funds it more than 7 times as much as embryonic—so the California program is an attempt to balance that great unfairness.
Make no mistake, adult or alternative stem cell research can be (and has been) funded under Prop 71: it just takes a serious vote by the scientific committee, a 2/3 majority: that is also in the law, under a provision called a "vital research opportunity"
"Vital research opportunity" means … any stem cell research… vital to advance medical science as determined by at least a two-thirds vote of a quorum of the members of the Scientific and Medical Research Funding Working Group and recommended as such by that working group to the ICOC." (emphasis added)
The Runner Amendment would remove that 2/3 preference, and substitute a simple majority. This is an attack on embryonic stem cell research, pure and simple.
Senator Kuehl stated this does not mean a change in California's preference for embryonic stem cell research.
With all respect, how is that possible?
If a 2/3 vote is changed to a simple majority, that is a huge change. Common sense applies: suppose you have to win a vote from a group of 100 people. What would be easier: to convince 51 people, or 67?
Secondly, look at the language of the law, Prop 71, which is now an official part of the California Constitution:
"Sec. 8. Amendments
"The statutory provisions of this measure… may be amended to enhance the ability of the institute to further the purposes of the…programs…" (emphasis added)."
Will someone explain to me how defying the clearly stated will of the California voters, and going against the law of Prop 71 itself, can possibly "further the purposes of the…programs"
So-- why did we lose the committee hearing—and why have we lost every committee hearing so far?
Here is part of a newspiece, ABC-TV reporter David Louie did on the issue, titled:
"Who should oversee stem cell research funding?
"San Francisco (KGO) "It's your money-- $3 billion earmarked for stem cell research with the passage of Proposition 71 four years ago. Now there's a new battle brewing concerning oversight of that money.
"Sacramento lawmakers already have their hands full, working on the state budget. But they're having little difficulty putting handcuffs on a $3 billion pot of money they would like to control.
"The bill that appears to be sailing through the state senate will give them a big say in stem cell research.
"The bill has been making its way through legislative committees, winning approval by wide margins.
"Critics say this is just the first step in trying to tighten the reins on the state stem cell agency…."—David Louie, KGO-TV/DT, 7/17/08
Bingo.
When I heard the words "putting handcuffs on a (program) they would like to control…",
I felt that click and shock of recognition, when you hear something that is exactly right.
This is a power struggle, pure and simple.
Who is going to control the state stem cell program?
Will it be run as the voters intended, by a committee of experts, people who understand the issues intimately because it is their life work, and who were chosen (by elected officials) precisely because they are at the very top of their field?
Or will it be run by politicians, who may have to start from scratch learning the issues?
Not to mention if the bill is re-written, it may become subject to budget cuts—and there may also be new opportunities for the opposition to sue and shut program down. California is now the number one source of embryonic stem cell research funding in the world—protected only by the careful legal structure of Prop 71. Remove that protection, and the program becomes vulnerable all over again to fresh lawsuits.
So—have we lost? Is the CIRM doomed?
Not even close.
Three possibilities of victory remain.
One: to take effect, SB 1565 must "be signed by the Governor" (see Sec. 8. Amendments.)
As far as I can tell, there is no provision for a veto override.
If Governor Schwarzenegger says "no" to SB 1565, that's it.
California wins, and our stem cell program is protected.
And if the worst happens, and the Governor signs it?
We will have to consider legal action: challenging the legality of SB 1565.
We all remember how California was so massively sued by the opponents of stem cell research. Until they were found without merit, those lawsuits held up the research for almost two years.
Now California may need to sue to protect the research so dearly won.
Option number three: if the Little Hoover Commission goes forward, we patient advocates get involved. We attend the hearings, participate as much as is allowed, report back to our friends, and educate everyone.
Let no one doubt: if the LHC suggests a new law to "put reins" on the California stem cell program, the patient advocacy community will defend what we worked so hard to build.
I talked to the leader of the Little Hoover Commission, Executive Director Stuart Drown, and he told me that if the LHC did take on the case, the legislative remedy might be another state-wide initiative.
At first I thought, okay, that is no problem—it was exhaustingly difficult to gather 1.2 million signatures for Prop 71—surely there is not that much negative energy to try and weaken our glorious stem cell program.
BUT-- the legislature can put an initiative on the ballot without any signatures at all… It is easy for them to do, and will need a great deal of hard work to defeat.
So, here is the question: who will run our stem cell program:
The patient advocate, education, and medical experts currently on the board, as was decided by the voters?
Or the politicians, who may know nothing about stem cell research—but who definitely do control state government?
Politicians, patients, and power: that is what this fight is all about.
P.S. If you would like to write a letter to the Governor, and express your opposition to Senate Bill 1565, that could be the most important political action you will ever take to defend stem cell research.
Please send hardcopy letters to:
Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
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