Right now, we are losing.
Senate Bill 1565, a major attack on California's stem cell program, will probably win.
SB 1565 has passed every hearing so far. There is only one hearing left, the Assembly Appropriations Committee, July 16th, in the Capitol building, Sacramento, fourth floor, room 4202, 8:00 in the morning.
Is there any way you can come to Sacramento to support California's program? If so, I am formally inviting you right now. We need your help.
Why is a bill attacking California's beloved stem cell program so close to being passed?
In addition to being part of Republican Senator George Runner's perpetual attack on embryonic stem cell research, the bill is a farewell gift to Democrat Senator Sheila Kuehl.
The Senator is "termed out", term limits being one of the great mistakes in the California legal system. Just when a Senator or Assemblymember learns how to work their office correctly, they are required to leave—while the lobbyists remain forever.
A genuinely beloved legislator, Senator Kuehl worked with all her might to pass a law guaranteeing health care for all Californians. Her visionary bill did not succeed, but every Democrat in office respects her dedication and commitment, especially in health issues. There is tremendous energy to give her a legislative success, on which to end her career.
Unfortunately, the bill (SB 1565, Kuehl,Runner) is a subtle and dangerous attack on our stem cell research program, and it is being rushed through with almost no examination.
It is a complicated bill, not easily understood. But if Senator Sheila wants it …
No, no!
Honor the Senator's contribution in other ways! Build a statue, endow a park, name a school after her—but do not pass a bill which could gut the California stem cell program.
What happens if we lose?
A good friend (and terrific fighter for the cause) tried to comfort me the other day, reminding that even if we lost SB 1565, the research would still go on. This is not our last stand, she pointed out.
True-- but we could lose the ICOC!
To me, that would be like getting an arm chopped off in a sword battle. We can pick up the sword with our other hand, and of course we will.
But there is no more powerful fighting arm for cure than the Independent Citizens Oversight Committee (ICOC).
The ICOC is led by Chairman Bob Klein, the man who gave his life savings to fund the campaign for Proposition 71. The ICOC is Joan Samuelson, founder of the world-renowned Parkinson's Action Network. Joan has Parkinson's in an advanced stage. Sometimes the condition gets so bad she has to lie down during the breaks at the meetings, but she will never quit trying. The ICOC is Dr. Oswald Steward, leader of the Reeve-Irvine Research Project, UC Irvine (and the Roman Reed Act), tireless, soft-spoken, his life dedicated to finding a cure for paralysis.
These and 26 more, our champions, are the real targets of the legislation.
Remember, the bill wants the Little Hoover Commission to go to work on the alleged "conflict of interest" in the California stem cell program. It specifically names the ICOC.
The Little Hoover Commission not only analyzes a government program; it also suggests and helps develop laws to fix the problems it finds.
The "problem" it is charged to solve is the alleged conflict of interest in the governing board: the fact that the board members are experts from their various fields, instead of politicians. (Personally, I think this is an advantage. We have already benefited from this expertise—like knowing how to get matching money from Institutions applying for facilities grants, so $271 million became $1.15 billion, almost four times the bang for the buck-- not to mention there are careful regulations designed specifically to prevent a member from using their power to advantage their home organization.
But the ICOC is the alleged conflict of interest the opposition is always talking about.
The most likely way to solve this alleged "conflict of interest"?
Remove the board which represents patients.
If we lose the fight, and SB 1565 becomes law, we could lose the ICOC.
Also, we definitely lose California's current stated preference for embryonic stem cell research. That is already in the text of SB 1565, no maybe's about it.
If the worst happens, and SB 1565 becomes law, is there any way to fight the restructuring of the program?
Yes. But it will be like picking up the sword with our weak hand.
The Little Hoover Committee process is required to be public.
So, we must follow the process as best we can. If there is public comment allowed, we must try to be there. If there are committees needing volunteers, we must try to be on them, and I hope there will be plenty of stem cell supporters involved—because we know the opposition will be there.
The people who endlessly criticize us would like nothing better than to be on a panel whose purpose is to "improve" the California Institute for Regenerative Medicine—and perhaps to be on the "new and improved" Board of Directors itself, the replacement for the ICOC.
Think of our opponents. Now imagine them running our research program.
If we lose in the battle against SB 1565, the fight will still go on, but it will be much harder, and we will be at a great disadvantage.
But we don't have to lose. There is still a way we can win.
We need to convince the legislature to take a closer look at what they are considering.
They need to know not one stem cell research group supports SB 1565.
How do we get that message across?
Every patient advocate group that supported Proposition 71 needs to write a letter opposing SB 1565.
Do you belong to a group that supports medical research?
If so, your group needs to send a hard copy letter on letterhead stationery, stating your opposition to SB 1565.
These letters should be sent to:
Assemblymember ____________
State Capitol—Room ____
P.O. Box 942849
Sacramento, CA 94249
Assembly Appropriations Committee Members
Mark Leno - Chair Room 2114
Mimi Walters - Vice Chair Room 6031
Anna M. Caballero Room 5119
Mike Davis Room 2160
Mark DeSaulnier Room 4162
Bill Emmerson Room 4158
Warren T. Furutani Room 5144
Jared Huffman Room 4139
Betty Karnette Room 2136
Paul Krekorian Room 5135
Doug La Malfa Room 4164
Ted W. Lieu Room 3173
Fiona Ma Room 2176
Alan Nakanishi Room 5175
Pedro Nava Room 2148
Sharon Runner Room 5158
Jose Solorio Room 2196
We need those letters. If we lose the next committee hearing, the last one—we can still try to convince Governor Schwartzenegger to veto the bill, which will send it back to the Assembly and Senate for reconsideration—
If you need time to get your group to write its letter, write your own as a member of the group, and send that in the meantime.
Please do something today. A little hassle now will save a whole lot of misery later on.
Finally, here are two position papers from the Americans for Cures Foundation: a one-page summary of the bill, and a call to action.
Why we Oppose Senate Bill 1565
Restrictions Won't Solve the Problem & Will Discourage Investment
Senate Bill 1565 begins with a noble goal: access to therapies for those who are uninsured. Unfortunately, the bill will have unintended and potentially disastrous consequences. It will actually delay the development of stem cell therapies that could reduce the suffering of millions. Rather than increasing access to therapies for some citizens, we believe the impact of this bill may be to deny access for all citizens by discouraging the investment by private industry in the development of stem cell therapies and cures. SB 1565 would restrict the research which is the best hope yet for millions of people who suffer from chronic illnesses, and millions of families who care for them. We all strongly support access to lifesaving treatment for those who need and want it. But we cannot fix the problem of access by tying the hands of the California stem cell program, which is the beacon of hope for developing these treatments.
Here are seven reasons you should oppose Senate Bill 1565.
1. This bill will discourage private industry from developing 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. By hobbling CIRM's ability to negotiate terms, SB 1565 will further discourage the pursuit of therapies for these uncommon diseases. SB 1565 abandons these patients and their families.
2. SB 1565 claims to find conflicts of interest in the Independent Citizens Oversight Committee (ICOC). This structure has been studied by two California courts and three independent audits. These studies declared the ICOC a convergence of expertise rather than a conflict of interest. Elaborate restrictions are in place to prevent Board Members from influencing decisions that might benefit his or her institution. Our view is that SB 1565's proposal to study ICOC structure again is redundant, and a poor use of taxpayer dollars. We further question the wisdom of selecting a review group whose conservative political views are well-known – in other words, an organization whose independent, impartial credentials cannot be verified.
3. While we believe in strong oversight of all state agencies, there is no excuse to waste taxpayer dollars repeatedly investigating a state agency that is a model of fiscal prudence. For example, CIRM's skillful negotiation during the facilities grants process turned $271 million in public funds into $1.15 billion in total investment in stem cell research.
4. SB 1565 claims to see a need to increase public accountability. In fact, the CIRM has a high standard of openness. It has already held over 100 public meetings. Opportunities for citizen involvement abound and citizens routinely participate in Board decisions.
5. SB 1565 is a direct contradiction of the will of voters regarding embryonic stem cell research. Seven million voters said yes to embryonic stem cell research in 2004 and SB 1565 would remove the legislative preference for this lifesaving research. While recent advances in alternative therapies are exciting, the vast majority of scientists agree that embryonic research remains the gold standard and is closer to the clinic.
6. By establishing an unfriendly environment for investment in stem cell therapeutics, SB 1565 would diminish California's leadership position in this cutting edge field. Biotech companies are increasingly outsourcing jobs to more supportive environments in other countries. California must continue to promote a healthy business climate.
7. The CIRM already guarantees access to the uninsured. The legislature'
Finally, here is the call to action from Americans for Cures Foundation:
"A few weeks ago, we asked you to help us stop the California legislature from handcuffing promising and lifesaving research by stopping Senate Bill 1565 (Keuhl-Runner)
1. Please call the Appropriations Committee at (916) 319-2081.
2. 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.)
The Appropriations Committee will hear the bill on July 16th, 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.)
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 bringing cures and therapies to Californians; 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 every Californian. And that is why we need you to call now.
1. Please call the Appropriations Committee at (916) 319-2081.
2. 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.)
3. 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@americansfor
Thank you for being on the frontlines in the fight for cures.
Warm regards,
Amy Daly & ConstanceMcKee, co-directors, Americans for Cures Foundation
Assembly Committee on Appropriations
| Committee Members | District | Phone | |
| Mark Leno - Chair | Dem-13 | (916) 319-2013 | |
| Mimi Walters - Vice Chair | Rep-73 | 916) 319-2073 | |
| Anna M. Caballero | Dem-28 | (916) 319-2028 | |
| Mike Davis | Dem-48 | (916) 319-2048 | |
| Mark DeSaulnier | Dem-11 | (916) 319-2011 | |
| Bill Emmerson | Rep-63 | (916) 319-2063 | |
| Warren T. Furutani | Dem-55 | (916) 319-2055 | |
| Jared Huffman | Dem-6 | (916) 319-2006 | |
| Betty Karnette | Dem-54 | (916) 319-2054 | |
| Paul Krekorian | Dem-43 | (916) 319-2043 | |
| Doug La Malfa | Rep-2 | (916) 319-2002 | |
| Ted W. Lieu | Dem-53 | (916) 319-2053 | |
| Fiona Ma | Dem-12 | (916) 319-2012 | |
| Alan Nakanishi | Rep-10 | (916) 319-2010 | |
| Pedro Nava | Dem-35 | (916) 319-2035 | |
| Sharon Runner | Rep-36 | (916) 319-2036 | |
| Jose Solorio | Dem-69 | (916) 319-2069 |
| Authors | District | Phone | |
| Senator Sheila Kuehl | Dem-23 | (916) 651-4023 | |
| Senator George Runner | Rep-17 | (916) 651-4017 | Via website: http://cssrc. |
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