Text Box:  Leaving the house at six in the morning, heading toward Sacramento for the hearings on Senate Bill 1565, I practiced my speech on the way, holding up my cards in the traffic jam. If they gave me a full three minutes, this is what I planned: SENATE BILL 1565: DON’S TESTIMONY, May 12, 2008 I am Don Reed, chair of Californians for Cures, and the sponsor of the Roman Reed Spinal Cord Injury Research Act, which many in this room supported. Thank you. While I have enormous respect for Senator Kuehl, I oppose Senate Bill 1565 as unnecessary, duplicative, and distracting to the goals of our research. First, charges are made of conflicts of interest due to the structure of the Independent Citizens Oversight Committee. As someone who attended virtually all of the roughly 100 meetings of the ICOC, I respectfully disagree. The California electorate voted for this governance structure precisely because it brought together outstanding leaders in the crucial areas—medicine, science, education, patient advocacy-- this is not a conflict of interest, but a convergence of expertise. Second, on the issue of financial return to the state: how many government programs bring in more money than they spend? The governing board of the California Institute for Regenerative Medicine voted last week to spend $271 million on stem cell research facilities—but that money has been “leveraged” (increased by matching grants from donors and other sources)—to more than one point one six billion dollars! Talk about getting more bang for your buck! Finally, the governance structure of the voter-approved Proposition 71 has already been investigated three times at state expense: once as a routine audit as part of our legal commitment to openness, secondly as part of the lawsuits posted by opponents of the research, and most recently by the state auditors. Every time the 26 employees of the CIRM have set aside their expected duties and devoted their energy to the investigation. The California Institute for Regenerative Medicine has survived its baptism by fire, and it has shown itself to be outstanding. Rather than being investigated for a fourth time, the ICOC should be emulated and imitated; our California stem cell research program is something shining, a source of pride for our Golden State, and the nation.  However… this was the Appropriations Committee. They would focus on the money aspects of the bill. Probably I would have one minute, (which two-thirds of the speech should I chop?) or even less.  Oh, drat. On my car’s dashboard, the little orange wrench symbol showed up on the trouble indicator.  The only thing I know how to do mechanically is to add oil, so I pulled over and threw some in, then crossed my fingers and went back on the road.  Arriving at the Capitol without accident, I parked on the second floor of the L Street lot, and hurried over to the hearing room, Senate Room 4203.  Which was closed.  Well, okay, I was a little early. That is what coffee shops are for, and I investigated my favorite one, on the sixth floor. The people are nice, and the refreshments are not toxic.  Went over my speech for the twelfth time.  The goal of SB 1565 is to re-examine the entire structure of our program, which was carefully worked out, and which the voters approved.  The tool they would use for that is the “Little Hoover” commission, a group which independently studies government bodies and recommends ways to make them more efficient. Generally speaking, “efficiency” means to make small.  Folks, I like the California stem cell program to be big and strong, which it is.  It is (excuse my language) an enormous frigging success—so why mess with success?  The other issue was low-cost access to drugs for uninsured Californians. It is my understanding that a solution to that has already been drawn up. So there really was no excuse for the bill. The only thing it would accomplish would be to consider remaking the whole structure, which so far has been the most efficient government program I ever heard of. How many government programs can you think of, that bring in more money than they spend?  Nine o’clock I went down to the fourth floor conference room again, waited some more.  Finally they opened the door, and let the mob of us inside.  I remember reading that in some countries, local rulers have days for citizens to come and voice grievances, and seek redress for arguments; this felt like that.  An auditorium full of folks dressed up in suits and ties.  High wood-paneled walls.  Narrow gaps between rows of chairs, much stepping over bodies and “excuse me”-ing.  A panel of Senators on a raised dais at one end of the room.  The committee which must be wooed, because it had the power of decision.  It began.  Immediately, a pattern emerged.  “Okay”, Senator Tom Torlakson would say, “we have _____________ presenting two bills?”  The legislator would talk about the bills, and then a witness (or two, or twelve) would testify.   The first witness got about thirty seconds; the rest just got to say their names, and if they supported the bill, or not.  Senator Torlakson was unfailingly kind, but very much in charge. If you went long, he would definitely stop you.  It had to be that way; there were two pages of bills to wade through, before we got to Senate Bill 1565.  Naturally I paid rigid attention to every interesting word of the first fourteen acts of legislation…  At two o’clock, roughly, the words FIFTEENSIXTYFIVE woke me from my semi-stupor. Huh, what?  I hustled down the aisle, sat down at the witness table, and listened to Senator Kuehl explain why her bill, Senate Bill 1565, was important.  My interpretation of her remarks was that while the CIRM had indeed met all her requirements on the access issue, (finding ways to give drugs derived from CIRM-funded research to the uninsured at low rates) still, such decisions could be undone, and she wanted them codified into permanent law.  But there was one key point that seemed a weak point in the armor of her bill… something about the Little Hoover Commission she wanted to investigate the ICOC.  Senator Torlakson said: “witnesses”?  Supporters always go first, so I waited—he nodded at me—“I am for the opposition”, I said. He nodded again, and I realized I was the only witness going to speak, for either side.  It is a little scarier up there than might appear. I had my notes reduced to a 3x5 card, and it was a great temptation to just hide behind it.  I introduced myself, and Senator Torlakson nodded his head, “Yes, yes, I remember you from last year,” he said, (like hurry up, please) and I rushed on.  “Duplicative, and unnecessary,” I heard myself say about the bill-- and then the words came together in my mind about the Little Hoover Commission.  “The California stem cell program has already been investigated three times—and now, a fourth investigation, another time-consuming distraction?  “This may even be a violation of law: the mandate of the Little Hoover Commission, which is supposed to be voluntary, so it can decide on its own to investigate whatever state institution it wants to investigate”—not a tool for political manipulation (I thought about that last part, but I don’t think I said it out loud.)  I got to put in the part about the ICOC being a “convergence of expertise”, which seems important as the opposition always trash-talks us as “conflicts of interest.”  Then I sat down, there being nothing further I could do. (The stem cell program has a governmental liaison, Sue North, but she did not speak. I don’t think she was allowed to speak yet, because the CIRM has as yet no official policy on the bill—but I don’t know that for a fact.)  Senator Torlakson asked Senator Kuehl how important it was that the Little Hoover Commission investigate, since there might be a legal question involved.  She said it was important.  Now that is a weak point, I think. If the Little Hoover Commission is required to be independent, then it cannot be used as a legislative weapon.  Also, I worry about new additions to the bill which may be proposed by Assemblyman George Runner, Republican co-author of the bill, and an open enemy of the research in general, and of Prop 71 in particular, which he called “snake oil”. One local newspaper described him as a “virulent opponent” of embryonic stem cell research.  Rumor is that he will try to convert Prop 71 to become more of an adult stem cell research funding source.  Ridiculous? Yes.  Possible? Definitely.  Stay tuned, folks.  P.S. I just received the results of the latest investigation of the California stem cell program, and it basically says, yes, everything is fine, exactly as the first two investigations said. The report does get all excited in paragraph four, when it found a problem, that scientists need to sign a review. Okay, duly noted, everybody be sure to sign the forms… now can they get on with the work we voters elected them to do?  Anyway, here is the press release about it, and a link to the complete 35 page report.  The big hearing coming up will be in mid-to-late June, in the Assembly Health Committee.  Might want to mark your calendar.  It could be important.




Text Box:

Text Box: #441 Tuesday, May 13, 2008 California Senate Bill 1565: Eight Hours to Wait, Thirty Seconds to Fight

STEM CELL BATTLES
Text Box: See this empty wheelchair? We who fight for embryonic stem cell research believe that wheelchairs are for temporary occupancy only. We do not accept the diagnosis of “incurable”, given to more than one hundred million Americans with cancer, paralysis, Alzheimer's, AIDS, Parkinson's disease, diabetes, MS, and more.  We are America's millions: patients, family, and friends. We support research to bring cures, to empty the wheelchairs everywhere.   Don C. Reed October, 2005 Don C. Reed is co-chair of Californians for Cures, and writes for their web blog, www.stemcellbattles.com. Reed was citizen-sponsor for California’s Roman Reed Spinal Cord Injury Research Act of 1999, named after his paralyzed son; he worked as a grassroots advocate for California’s Senator Deborah Ortiz’s three stem cell regulatory laws, served as an executive board member for Proposition 71, the California Stem Cells for Research and Cures Act, and is director of policy outreach for Americans for Cures. The retired schoolteacher is the author of five books and thirty magazine articles, and has received the National Press Award.     BlastocystEmpty Wheelchair

                                                                                                                                                                                                                                                                                                                                  300 Capitol Mall

Sacramento, CA 95814

916.445.2636

www.controller.ca.gov

                                                                                                              PR08:026

FOR IMMEDIATE RELEASE: CONTACT: HALLYE JORDAN

                                                                                                              MAY 12, 2008 916-445-2636

Chiang Releases Results of Financial Review of California’s Stem Cell Institute

SACRAMENTO – State Controller John Chiang today unveiled the results of an audit

conducted on the California Institute for Regenerative Medicine (CIRM), the stem cell grant program created in 2004 by Proposition 71. The review found CIRM’s conflict-of-interest policies, grant administration, administrative expenses and expenditures conform with Proposition 71 and generally were followed.

 The State Controller ordered the audit to determine whether the Institute was following the conflict-of-interest policies, grant administration and expense guidelines established by Proposition 71, the California Stem Cell Research and Cures Act. The results of the audit found the Institute has adopted adequate policies in each area, often basing its standards on National Institute of Health requirements and industry best practices.

 The Controller chairs the Citizens Financial Accountability and Oversight Committee (CFAOC), which also was created by Proposition 71 to oversee the finances of the publicly funded stem cell research program. The Controller called for the audit of CIRM’s policies and procedures at the last CFAOC meeting in November 2007.

 Chiang has scheduled a meeting of the CFAOC on July 7 in San Diego to publicly review the audit findings and discuss the Institute’s financial reporting.

 The complete audit can be found at www.sco.ca.gov.

 

  

71, the California Stem Cell Research and Cures Act. The results of the audit found the Institute has adopted adequate policies in each area, often basing its standards on National Institute of Health requirements and industry best practices.

  

 

The Controller chairs the Citizens Financial Accountability and Oversight Committee (CFAOC), which also was created by Proposition 71 to oversee the finances of the publicly funded stem cell research program. The Controller called for the audit of CIRM’s policies and procedures at the last CFAOC meeting in November 2007.

 

Chiang has scheduled a meeting of the CFAOC on July 7 in San Diego to publicly review the audit findings and discuss the Institute’s financial reporting.

 

The complete audit can be found at www.sco.ca.gov.