Folks, ever since CA passed Prop. 71 in 2004 opponents of embryonic stem cell research have been busy working to undermine it, in the courts and state legislature.  Don Reed works tirelessly for all of us.  If you agree that it is important that this research go forward, he has made it easy for you to click on the email addresses below and let CA legislators know what you think.
Ray
Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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----- Original Message ----- 
From: [log in to unmask] 
To: undisclosed-recipients: 
Sent: Friday, June 20, 2008 12:20 PM
Subject: Friday, June 20, 2008 - REWRITE CALIFORNIA STEM CELL PROGRAM? 



 Imagine if we were back in 1776, and the Revolutionary War had just been won-- and somebody suggests we should allow King George III the opportunity to re-write America’s Constitution? That would be ridiculous, true? Hold that thought, please.
   

  In 2004, California won the stem cell battle, passing Proposition 71, the California Stem Cells for Research and Cures Act. 

   

  Opponents of embryonic stem cell research like Senator George Runner (R-17) had their chance to defeat Proposition 71, and they lost. 

   

  Now, four years later, should research opponents be allowed to rewrite the California stem cell research program?

   

  That appears to be the goal of Senate Bill 1565 (Kuehl, Runner).

   

  SB 1565 requires the conservative Milton Marks Little Hoover Commission to study the California Institute for Regenerative Medicine, and recommend changes.

   

  SB 1565 would also reduce our support for embryonic stem cell research, defying the clearly expressed will of the California voter.



  And, in the name of access to the uninsured (provisions for whom are already in place) SB 1565 would set a “one size fits all” policy in place, denying bargaining ability to the California Institute for Regenerative Medicine.

   

  Who is behind this? Senator George Runner (R-17) is an open opponent of not only embryonic stem cell research, and Proposition 71, the California Stem Cells for Research and Cures. He is working with Senator Sheila Kuehl, just as he worked with Senator Deborah Ortiz two years before, on similar anti-Prop-71 legislation.

   

  Three days ago, Tuesday June 16th, at the Capitol in Sacramento, the Assembly Health Committee heard the bill.

   

  It was a disaster, with everyone on the committee voting to support SB 1565.

   

  This time, at least, the opposition was heard. (The first three committee hearings, I believe I was the only patient advocate to speak.)

   

  The chair even said, “I guess there is no opposition to your bill, Senator—oh, there is opposition?” He was surprised, when the line of people along the wall moved forward. 

   

  Opposition this time was led by Ed Penhoet, vice-chair of the ICOC. Ed is a deeply committed member of the philanthropic community, with a long list of accomplishments in the environmental field, not to mention his hard work for the ICOC. He spoke strongly on the positive accomplishments of the California stem cell program. He determinedly took the high road, listing just a few of  CIRM's many accomplishments.


  Unfortunately, the chairman of the Committee, Assemblymember Mervyn Dymally, said he felt "disrespected" because no one from CIRM had contacted him about the bill. He said (after Ed spoke)"You boastin' about all these people you talked to, but you didn't have time to talk to the chair of the Assembly Health Committee? I have to admit I feel disrespected." He repeated this several times. I personally had visited his office, and left materials after speaking with his legislative aide, but I am not official.   

   

  A representative of the biomedical industry read a statement in opposition.  

   

  Karen Miner was present, frail but determined, saying, “Karen Miner, Research for Cure, in opposition.”

   

  I said, “Don Reed, Californians for Cures, in opposition.”

   

  Patient advocate Diane Winokur, a trustee for the ALS Foundation, had ridden up with me, intending to speak. When we arrived, however, Ed Penhoet and the Biomed lobbyist were set to be our two speakers. They were given three minutes each, and that was all.

   

  But Ms. Winokur is not someone easily denied. When opponents were allowed (only) to say names, organizations, and “oppose”, or “in opposition”, this small fashionable powerhouse of a woman spoke anyway, even as the chairman kept raising his finger to stop her. 

   

  In thirty seconds, she reminded us what we were fighting for. She spoke of her son lost to ALS, Lou Gehrig’s disease, and another son also diagnosed with the incurable condition. California had approved Proposition 71, she said, and it was time to let it do the job we elected it to do. 

   

  One committee member asked Senator Kuehl if she had known of this opposition, as there was no opposition officially listed.

   

  Senator Kuehl said the patient advocates had come to the hearings, so she knew about their involvement, but she was surprised that the CIRM came.

   

  After that it was all downhill, and everything that was said was an attack on our stem cell program, and we were not allowed to answer.

   

  Well, Diane answered anyway. 

   

  Responding to the implication that we advocates were just moved by desperation (and might not be thinking too straight), she said:

   

  “It is important to remember that our objections to this bill come from the brain as well as the heart.”

   

  There was also an “improvement” added, an amendment by Senator Runner. 

   

  Senator Runner’s amendment would make it easier for adult stem cell research to be funded by Prop 71, removing our current preference for embryonic stem cell research.  Prop 71 began precisely because the national government would not support new embryonic stem cell research—we included language in California’s law, giving preference to pluripotent stem cell research unlikely to be funded by the feds. 



  SB 1565 is being sold with a noble goal—to guarantee the poor have access to medicines and therapies developed from California’s stem cell program. However, this can be done, and is in fact being done, without the need for legislation. 

   

  The CIRM has already approved regulations which answer her objections.

   

  As the official analysis of her own bill reads: 

   

  “On March 12, 2008, the ICOC (Independent Citizen’s Oversight Committee, the stem cell program’s governing body) issued draft revised regulations for grants to for profit entities to include a requirement that all plans must provide access for uninsured Californians…similar to the language in SB 1565…”

   

  Senator Kuehl has publicly admitted that she and the CIRM are on the same page in regards to ensuring access for the uninsured.

   

  What other reasons does she have for supporting a bill which could do permanent to our shining stem cell program?

   

  Her press release states: 

   

  “…The bill would…ensure the public’s trust by identifying ways to increase public accountability and reduce conflicts of interest.”

   

  Well, let’s see. Despite lawsuits, court challenges, rival legislations, and the cutting off of funds for the first two years, the California Institute for Regenerative Medicine has held approximately 100 public meetings. Is there any government body more open and accountable than that?

   

  Reduce conflicts of interest?

   

  That refers to the governing board, the Independent Citizens Oversight Committee (ICOC). Opponents of our program like to talk trash about the ICOC, implying that because they come from colleges, medical institutions, the biomedical industry, patient advocate groups, and other stakeholder organizations, that they are therefore automatically involved in a conflict of interest.

   

  Calling the ICOC corrupt would be a gross calumny, unsupported by fact. These are genuinely great men and women, leaders all, and they take great pains to recuse themselves from any decisions which might benefit their home organizations.  Far from a conflict of interest, their presence on the board is a convergence of expertise, bringing together the best minds in their widely ranging fields.

   

  Not only that, but what is the alternative?

   

  Another layer of governmental bureaucracy, staffed by folks who got their job by supporting Congressman X with campaign contributions? 

   

  Thank you, no, I prefer the experts.

   

  If we remove the ICOC, we lose the power of their knowledge and experience.

   

  California voted for Prop 71; now we must keep what we won—or allow opponents of our beautiful law to suggest “improvements” to it—about as helpful as throwing an anchor to a swimmer.

   

  SB 1565 must be defeated.

   

  The bill goes next to the Judiciary Committee, Room 4202, Tuesday, June 24, 9:00.

   

  Be there, if you can.

   

  An email to members of the Assembly Judiciary Committee: 



        Committee Members District Phone E-mail 
          Dave Jones - Chair  Dem-9 (916) 319-2009 [log in to unmask]  
          Van Tran - Vice Chair  Rep-68 (916) 319-2068 [log in to unmask]  
          Anthony Adams  Rep-59 (916) 319-2059 [log in to unmask]  
          Noreen Evans  Dem-7 (916) 319-2007 [log in to unmask]  
          Mike Feuer  Dem-42 (916) 319-2042 [log in to unmask]  
          Rick Keene  Rep-3 (916) 319-2003 [log in to unmask]  
          Paul Krekorian  Dem-43 (916) 319-2043 [log in to unmask]  
          John Laird  Dem-27 (916) 319-2027 [log in to unmask]  
          Lloyd E. Levine  Dem-40 (916) 319-2040 [log in to unmask]  
          Sally J. Lieber  Dem-22 (916) 319-2022 [log in to unmask]  


   

   

   






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