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STEM CELL BATTLES
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Folks, your help is needed.
Tuesday, June 17, there will be a Sacramento hearing on a bill which would (once again) attempt to hamstring the operations of the California stem cell program.
Proposition 71 is under attack—again! Tuesday is a crucial hearing to protect Prop 71, our wonderful stem cell program, and today is Friday.
Can you come to Sacramento that day? If so, drop me an email here.
Before then, there is work to be done. Today, in about half an hour, I will be on the road to Sacramento to visit the offices of the members of the Health Assembly Committee.
They don’t know I’m coming, and it will be like, “Oh, you don’t have an appointment? No? Oh, well, the person you should really talk to Susan______, but she is in a meeting, could you come back in 2 hours and 37 minutes?” Which I will say of course, write the time down, say thank you very much, and go on to the next of the 26 offices…
No matter what state you live in, the California stem cell research program is for you.
But the hearing is the crucial thing. If our side is not represented, we will lose. So far the patient advocate side basically has not been heard. I have been there babbling at all four hearings, but nobody else, and the bill has not received a single no vote.
You personally can help. Doing nothing, hoping someone else will show up, is the way to lose. If you are in driving distance of Sacramento, please consider joining me at the hearing. I do not have the hour or the room number, but will know them soon.
If you cannot come yourself, could you send an email?
Consider sending an email (the same one) to each member of the committee.
One sentence is all that is really needed, and you do not have to live in their district.
It could be short: “As a supporter of stem cell research, I urge your NO vote on Senate Bill 1565. “
Or long as you want.
Here is the letter I sent:
NAME, ADDRESS AND PHONE NUMBER
As the father of a paralyzed young man, and the sponsor of a successful California law supporting spinal cord injury research*, I strongly oppose SB 1565 (Kuehl/Runner), a bill with many hidden threats.
Three reasons leap to mind:
1. SB 1565 would require the Little Hoover Commission to investigate the California Institute for Regenerative Medicine (CIRM)—for a fourth time. The California stem cell program has already been investigated (and found squeaky clean) three times. Further dissection is not only a waste of taxpayer dollars, but also a distraction from duty on an already short-handed CIRM staff.
2. By mandating a one-size-fits-all approach to affordable access for uninsured Californians, (a goal we all share) SB 1565 would deny bargaining ability to the CIRM. This could defeat the CIRM’s ability to negotiate with corporations. For instance, diseases like Spinal Muscle Atrophy (SMA) devastate lives of infants and their families, but the number of patients is not a large enough market to attract corporate investment. If CIRM retains its bargaining ability, (which SB 1565 threatens) it could offer flexibility in pricing on one area, in exchange for industry involvement in an “orphan disease” like SMA, thus potentially saving lives and advancing science for the good of all.
3. Co-author Senator George Runner, who has been described as “virulently anti-embryonic” in terms of stem cell research, reportedly seeks a new change in SB 1565. Senator Runner wishes to increase funding for the more conservatively-favored “adult” stem cell research, the type approved (and preferentially funded) by the Bush Administration. To backpedal now would be to deny the will of the California voters.
While doubtless begun with the best intentions, SB 1565 would be a frustrating obstacle to the California stem cell program, and all who support research for cure.
On behalf of millions who suffer chronic disease and disability, and who look to embryonic stem cell research for hope, I urge your strong opposition to SB 1565.
Sincerely,
Don C. Reed
· California’s Roman Reed Spinal Cord Injury Research Act of 1999, named after my paralyzed son, provided funding for a paralysis treatment developed by Geron, which is currently under discussion by the FDA, and we hope it will soon go to human trials.
Okay, that was my letter. Yours does not have to be so elaborate. A sentence or two is fine.
Below are the email addresses. The bill itself is the very bottom of the page,
Thanks, and I hope to see you at the hearing, June 17th!
Best,
Don |
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Assembly Health Committee
Here is the full text of the bill.
BILL NUMBER: SB 1565 AMENDED BILL TEXT
AMENDED IN ASSEMBLY JUNE 9, 2008 AMENDED IN SENATE APRIL 16, 2008
INTRODUCED BY Senators Kuehl and Runner ( Coauthor: Senator Wiggins ) (Coauthor: Assembly Member Jones)
FEBRUARY 22, 2008
An act to amend Section 125290.60 of, and to add Section 125293 to , the Health and Safety Code, relating to reproductive health.
LEGISLATIVE COUNSEL'S DIGEST
SB 1565, as amended, Kuehl. California Stem Cell Research and Cures Act. The California Stem Cell Research and Cures Act (the act), an initiative measure approved by the voters at the November 2, 2004, statewide general election as Proposition 71, establishes the California Institute for Regenerative Medicine (CIRM), the purpose of which is, among other things, to make grants and loans for stem cell research, for research facilities, and for other vital research opportunities to realize therapies, protocols, and medical procedures that will result in the cure for, or substantial mitigation of, diseases and injuries. Existing law establishes the Independent Citizen's Oversight Committee (ICOC) composed of appointed members, that is required to perform various functions and duties with regard to the operation of the institute, including, but not limited to, establishing standards applicable to research funded by the institute. Existing law prohibits amendment of Proposition 71 by the Legislature unless the amendment is approved by the voters, or the amendment is accomplished by a bill introduced after the first 2 full |