Critics of the California stem cell program are prescribing major surgery: their procedure, Senate Bill 1565, (Kuehl, Runner) amounts to a re-do of the program California voted into law.
Should we close our eyes and let them do it? What if they are wrong?
Make no mistake: Senate Bill 1565 is no routine checkup. It is a full-scale major operation.
And there is nothing wrong with the patient...
Tomorrow morning at nine o’clock, Wednesday, July 16th, SB 1565 will be heard before the Appropriations Committee hearing at the Sacramento Capitol. It is the last full committee hearing on SB 1565, before it goes to the Assembly floor.
Folks, this is budget crisis time, the most difficult weeks of the year. There is no way a crucial and long-term bill like this can be properly studied now.
And we will be stuck with the results. Permanently...
If SB 1565 passes tomorrow, it can only be defeated by a veto from the Governor.
If you can join us at the Capitol building in Sacramento, fourth floor, room 4202, 9:00, please do. We will want you to stand with us, as we speak our names, and organizations, and say, "We oppose SB 1565."
There is a lot riding on this.
First, the bill is unnecessary. The good part about it is already set up.
The stated goal of SB 1565 is to guarantee that any medical treatments made from our stem cell program will be made available to low income Californians.
That purpose has already been met. Guarantees of access to the uninsured are already established—listen to the official state analysis:
"...on March 12, 2008,...the stem cell program’s governing body issued draft revised regulations...a requirement that all plans must provide access for uninsured Californians...similar to the language in SB 1565..."
So if the positions are close, who cares?
You do: for three very good reasons.
First, the bill would remove California’s stated preference for embryonic stem cell research, which was the reason our state passed Prop 71 in the first place. This sends absolutely the wrong message to our scientists and indeed the entire country, as if we have found that alternative methods are equally good, which is false. This proposal was put in the bill by Senator George Runner, a known opponent of embryonic stem cell research in general, and Prop 71 in particular.
Second, establishing price controls is premature at best. Right now, there are no products developed. We do not know what they will be, or when they will arrive. Do we want to lock ourselves in to a set-in-stone procedure? Maybe we (the California program) will want to be able to negotiate a better deal when the time comes.
For example, my son’s condition, spinal cord injury paralysis, is called an "orphan disease" because the condition "only" affects about 250,000 Americans. That means a comparatively small market, not as attractive to the corporate dollars as a "big" medical condition like heart disease, which affects many millions.
What if, in exchange for being allowed to charge a little more for their heart disease medication, the corporations would agree to make a paralysis treatment more affordable?
SB 1565 would prevent any negotiations for a better deal with the corporations-- who will decide how much money to invest.
Finally: if you have had the time to follow California’s stem cell program, you have seen how it has triumphed over obstacles at every turn.
Its strength is a committee of experts, called the ICOC, short for Independent Citizens Oversight Committee. Led by Bob Klein, the ICOC has met crisis after crisis: lawsuits, budget cutoffs, restrictive legislation: and all the while the research has moved forward.
Efficient? One example: the budget allowed $272 million for laboratories and equipment. The ICOC was able to insist on "matching" funds, attracting donations of more than $800 million dollars in "new money", bringing in far more money than they spent—how many programs get such bang for the buck?
The ICOC is threatened by SB 1565.
Alleging a "conflict of interest" due to the makeup of the ICOC’s panel, as if because it is experts, it is automatically corrupt, SB 1565 will allow a group called the Little Hoover Commission (LHC) to examine our governing body, and suggest "improvements"—and prescribe laws to make it happen.
Is there a conflict of interest? Not according to the California court system.
Read this statement from the trial, which focused on that exact point.
"In this case, by approving Proposition 71 the voters have determined the advantages of permitting particularly knowledgeable persons to decide which research projects to fund outweigh any concerns that these decisions may be influenced by the personal or professional interests of those members, so long as the members do not participate in any decision to award grants to themselves or their employer."
California Family Bioethics Council v. California Institute for Regenerative Medicine, 147 Cal.App.4th 1319, 1368 (2007).
But it sounds so harmless, allowing an efficiency organization to investigate the governing body of the program—to "reduce conflicts of interest".
But what would it actually mean?
I called up the Executive Director of the Little Hoover Commission, Stuart Drown, and asked him. Here is my understanding from that brief conversation.
There would be a series of public hearings, and a committee, perhaps several committees. Who would be on those committees? My guess is it would be the critics who have opposed the stem cell program since day one.
After the public input, the Little Hoover Commission would make its analysis—and suggest legislation.
The LHC would make up a law to fix the alleged problem.
Probably, said Mr. Drown, it would be an initiative.
At first that did not worry me, because I know how hard it is to do an initiative-- but not like the one we had to do to make Prop 71 a law.
There would be no need for signatures gathered; the initiative would just be placed on the ballot by the legislature.
And then people like you and I, the stem cell advocates, would have a very limited amount of time to try and fight it.
And remember, this is just to keep what we have already won!
We had this fight before, and California decided: we voters chose the structure for our program: a committee of experts, appointed by elected officials: a brilliant combination of the public and private expertise.
So, dear Friend of Prop. 71: you stood beside us in the successful fight to pass Proposition 71, the California Stem Cells for Research and Cures Act.
We must now protect what we have won.
I ask two things:
First, be sure both you and/or your group takes a position opposing SB 1565. (This is easy to do, just email info@americansforcures.org, and say you want to officially state opposition to SB 1565) .
Secondly, please write a hard copy letter to California’s Governor Arnold Schwarzenegger, asking him to veto Senate Bill 1565, if it should reach his desk.
It will be difficult for him to veto a bill brought to him by powerful members of both parties. We need to be sure he knows we in the stem cell community-- all across the countru-- back him up on this matter.
Please request that the Governor veto Senate Bill 1565, if and when it reaches his desk. Write him at: Governor Arnold Schwartzenegger, State Capitol Building, Sacramento, CA 95814. Or fax him at: (916) 558-3160
Remember you are welcome to join us at the committee hearing, tomorrow, Wednesday, July 16th, 9:00 AM, Room 4202, Sacramento capitol.