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STEM CELL BATTLES
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The doctor held up a very large needle, the approximate dimensions of a whaling harpoon, and announced she was going to insert it into my left knee.
“The Cortisone injection may help the pain,” she said, finger-snapping the syringe, to prevent an accidental bubble formation which could be fatal to the patient.
I courageously closed my eyes. But first, I made sure she knew which knee to inject. There had been a problem earlier at the radiation lab. A technician there had wanted to X-ray the wrong knee...
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.
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.
And then people like you and I would have a very limited amount of time to try and fight it.
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.
SB 1565 sets up an attack on the entire governance system of the successful program. It could facilitate the removal of our panel of experts (the Independent Citizens Oversight Committee, or ICOC) replacing it with bureaucrats, and/or opponents of stem cell research—even make it possible for research funds to be diverted to other programs.
Do I exaggerate? I know two spinal cord injury research programs, one in New York, one in New Jersey, both of whose funding was transferred away from research over to the general fund. New York lost $8.5 million a year for three years—$25.5 million which the voters wanted to go into research, but which a Governor transferred over to the general fund!
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 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, Wednesday, July 16th, 9:00 AM, Room 4202, Sacramento capitol.
Here is the latest news: CAMR (the Coalition for the Advancement of Medical Research) is opposing SB 1565!
This is wonderful news indeed!
Here is the official letter, just released to the press.
Coalition for the Advancement of Medical Research 2021 K Street, N.W., Suite 305 Washington D.C. 20006 202.725.0339 www.camradvocacy.org July 10, 2008 The Honorable Karen Bass Speaker, California State Assembly State Capitol P.O. Box 942849 Sacramento, CA 94249-0013 Via Facsimile: (916) 319-2147 RE: SB 1565 Dear Speaker Bass, I am writing on behalf of the Coalition for the Advancement of Medical Research (CAMR) to urge the California State Assembly to reject any legislation that would adversely impact the progress of stem cell research in your state.
CAMR represents the voices of patients, physicians, scientists, and academic institutions across the country in the hope that embryonic stem cell research will provide cures and better treatments for those who suffer from debilitating diseases and disorders. We have grassroots members from patient and other advocacy organizations in every state in the nation, including California.
We are concerned about any legislation in California that may dampen enthusiasm for stem cell research by creating formula price controls for drugs or therapies developed by the California Institute for Regenerative Medicine (CIRM) and its grantees. This is not the first time CAMR has expressed concern about the impact of proposed legislation on research conducted by CIRM. In May 2007, we directed a letter to the leadership of the California Senate to express our opposition to SB 771, a bill authored by Senator Sheila Kuehl that proposed a new process to establish drug prices. (A copy of our previous letter is attached for your information.) California made the right decision by striking the anti-research provisions in that bill and we hope that position will be maintained on any other bills that come before you.
We specifically oppose any legislation that might create a rigid pricing formula for products resulting from research at CIRM that could drive away private investment in stem cell research.
Thank you for your attention to our concerns. We urge California to continue with its progress and global leadership in the field of stem cell research by rejecting any legislation that would create new barriers to research.
Sincerely,
Amy Comstock Rick, President Attachment: CAMR 2007 Letter cc: Assemblyman Mark Leno Senator Sheila Kuehl Senator George Runner
And if you want to do something right this minute…
The following is from Americans for Cures Foundation. (I work for them as Vice President for Public Policy, but my columns are written as an individual.)
SB 1565 Action Alert for Appropriations CommitteeWe need you to take a few minutes to help save the California Institute for Regenerative Medicine and embryonic stem cell research in California. This is under siege right now in the state legislature. A few weeks ago, we failed to stop Senate Bill 1565 (Kuehl-Runner). The bill was passed by the Senate, and has now also passed through two Assembly Committees: Health and Judiciary. The final step before a floor vote is a hearing in the Assembly Appropriations Committee (contact information below). We need you to act now and ask for a NO vote on SB 1565. Here's how: Please call the Appropriations Committee at (916) 319-2081 and fax the Committee at (916) 319-2181. Please email us to add your name to our list of those who oppose SB 1565. Please call/fax/write as many of the Committee Members as you can. Please call/fax/write your own Assembly Member. (To find your Assembly Member or State Senator, please click here and enter your address.) Please see below for a script/sample email. The Appropriations Committee will hear the bill on July 16, and so we need your help right now. If you live near Sacramento, please consider joining us in person to stand up for this research. (Let us know if you can be there we'll keep you updated on time and place.) Over seven million voters expressed a desire to fund embryonic stem cell research when they passed Proposition 71. SB 1565 would remove the built-in preference for embryonic stem cell research - directly contradicting the will of Californians. We passionately support the goal of healthcare that is accessible and affordable to all Californians. However, this bill will discourage private industry from developing therapies and cures. Currently, the law allows the California Institute of Regenerative Medicine (CIRM) to provide companies with additional incentives to develop therapies for "orphan" diseases such as cystic fibrosis and Lou Gehrig's disease. SB 1565 will eliminate these incentives, making it financially unfeasible for companies to pursue therapies for rare diseases. SB 1565 abandons these patients and their families. If SB 1565 passes, entrepreneurs and private capital will likely remain on the sidelines in the fight for cures. That means a delay in developing cures and therapies; even worse, therapies for some conditions may never be developed. Opposing SB 1565 keeps therapy development on the fastest track for cures. Opposing SB 1565 is the best vote for taxpayers because new therapies can reduce direct and indirect economic costs. Opposing SB 1565 is the best vote for families and patients who suffer every day from devastating chronic conditions. We must accelerate investment in CIRM technologies for the benefit of everyone. And that is why we need you to call now. Please call the Appropriations Committee at (916) 319-2081 and fax the Committee at (916) 319-2181. Please email us to add your name to our list of those who oppose SB 1565. Please call/fax/write as many of the Committee Members as you can. Please call/fax/write your own Assembly Member. (To find your Assembly Member or State Senator, please click here and enter your address.) Ask your friends and family to do the same. After you have done your best to stop SB1565, please let us know what you were able to accomplish. (inform@americansforcures.org) Thank you for being on the frontlines in the fight for cures. Warm regards, For a full analysis of the bill and its negative impacts, please click here. Sample Script/Email: Hello, my name is ______________, and I live in ____, CA. I am calling/writing to urge Assembly Member __________ to oppose Senate Bill 1565 in the Appropriations Committee and on the floor. SB 1565 will remove CIRM's funding preference for embryonic stem cell research and will delay the development of emerging medical treatments that have the potential to help millions of Californians and people around the globe. SB 1565 will price-fix technologies not yet in existence. It will discourage investment in vital stem cell research and cures. We must stay on track to develop these lifesaving treatments, and for that, I am asking for your NO vote on SB 1565. Thank you.
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