|
May 2008
|
|
Californians for Cures |
|
The California Institute for Regenerative Medicine (CIRM)’s $3,000,000,000 over ten years is the largest source of embryonic stem cell research funding in the world. |
|
We began as a small grassroots Internet group met by chance online and made a powerful connection. Together with the help of Assemblymember Don C. Reed |
|
New Bill (SB 1565) Legislative Headache for California Stem Cell Program
Ever since California voted Proposition 71 into office, the new stem cell program has been under constant attack. Its funds have been blocked; it has been sued by ideological opponents; it has been audited, re-audited, and is now being re-re-audited-- but the California stem cell program comes up squeaky clean every time.
On one hand, I am proud that my state has an organization so outstanding that it can withstand the closest scrutiny.
As a patient advocate, however, I do not welcome distractions from our primary goal, “Turning Stem Cells Into Cures”, as the official motto states.
I particularly object to political hassles.
If a citizen like me raises a hand at a meeting, and offers a suggestion or criticism that turns out not to be a good idea, that ties up the committee for a little while.
But Sacramento’s upraised hand can be a fist, and its mistakes can become law.
And now, another political hassle has arisen.
A new bill, SB 1565*, (Kuehl, Runner) has just been offered in Sacramento.
It sounds reasonable at first: but the closer you look, the more problems and complications emerge.
SB 1565 begins with requirements for access for the uninsured, so that stem cell cures could be available cheaply for those who could not otherwise afford them.
The question of affordable medical care is vital, and complicated—but putting that burden on the back of researchers has always seemed a bad idea to me.
Before we can have cheap cures, we must first develop the cures themselves.
Insulin for diabetics, today costs about ten cents a dose; originally it cost thousands of dollars. Would it have been developed if researchers had been required by law to make it cheaply available, instantly?
The authors of the bill are surely aware that affordability and access policies are being worked out carefully—and that there are as yet no products to argue about.
Far more worrisome is SB 1565’s attempt to restructure the entire stem cell program.
The guts of the bill is a proposed eighteen-month study, to be done by a group called the “Little Hoover” Commission on California State Government Organization and Economy, a politically-appointed group intended to “promote efficiency in government operations.”
And the purpose of that study?
Page 3, Section 2, paragraph (a): “The Commission… shall conduct a study of the governance structure of the California Stem Cell Research and Cures Act… including the membership of the Independent Citizens Oversight Committee and the relative roles of the committee and the California Council of Regenerative Medicine.” (emphasis added)
What is the “California Council of Regenerative Medicine”? I am not sure.
A Google search reveals almost nothing, just the separate words defined.
But I believe it refers to a panel developed six years ago by Senator Deborah Ortiz.
Her law, (SCR 55, Ortiz, 2002)* established an advisory panel. It was part of the Senator’s package of legislation to establish and legitimize stem cell research in California: a great contribution to America, and a salute to her vision.
But there was no funding for the research, and even the advisory panel was starved for money. At first, there was quite literally nothing allowed. I worked as a grassroots organizer for the Senator back then, and I remember the effort it took to gain just enough funds to pay for a few meetings.
In the six years of its existence, the panel has met about four times, two of which meetings I attended. This is no reflection on the panel members, who are good folks, people you and I know and respect; but they have essentially no budget, and little actual authority, beyond the capacity to advise.
The Independent Citizens Oversight Committee, however, has the mandate of the California electorate. It is funded, it is part of the California Constitution, and it gets the work done.
A balanced blend of patient advocates, medical experts, business representatives, and education officials, the ICOC brings overwhelming expertise to every problem it faces. It works in an inclusive and open manner. Through nearly 100 public meetings, it has proved responsive to legitimate criticism and suggestions for improvement from all quarters, including our leaders in the state capitol. It overcomes obstacles, working with citizens, scientists, academicians and legislators-- for the good of all.
It would be a colossal blunder to weaken this effective council, to even consider supplanting it with a powerless political bureaucracy.
SB 1565 could reduce the effectiveness of the Independent Citizens Oversight Committee (ICOC), and deny the will of the California voters.
If you, like me, consider SB 1565 a disaster to be headed off, please consider contacting the authors of the bill, and just say: SB 1565 serves no useful purpose, and could hinder California’s stem cell program in the performance of its duty.
Thank you.
Senator Kuehl can be reached at: Email: senator.kuehl@sen.ca.gov Senator George Runner can be reached at::
*Kuehl Introduces Stem Cell Agency Oversight Legislation Friday, February 22, 2008 For Immediate Release: February 22, 2008 In order to bolster the California Stem Cell Research and Cures Act, which California voters approved as Proposition 71 in November, 2004, State Senator Sheila Kuehl (D-23) today introduced SB 1565, which works to ensure that the state’s neediest residents will have access to therapies and drugs that result from the publicly funded research made possible by this $3 billion bond-funded initiative, and requires the state’s Little Hoover Commission to study the existing governance structure and to report to the Legislature by July 1, 2009. **SCR 55 (Ortiz) Stem cell research. Resolves that there is hereby established a panel to advise the Legislature on stem cell research, and resolves that the advisory panel be required to evaluate the medical, social, legal, and ethical implications of stem cell research, the appropriate policy for California, and ways in which the state can support existing efforts to fulfill the promise of stem cell research. (Resolution Chapter 153, Statutes of 2002)
|
|
For current articles regarding stem cell research, visit: |
