DEFEND CALIFORNIA'S STEM CELL PROGRAM! Send one E-mail—or Yourself?
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)
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-
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-
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
Assembly Health Committee
| | Dem-52 | (916) 319-2052 | |
| | Rep-10 | (916) 319-2010 | |
| | Dem-1 | (916) 319-2001 | |
| | Dem-62 | (916) 319-2062 | |
| | Dem-50 | (916) 319-2050 | |
| | Dem-45 | (916) 319-2045 | |
| | Rep-63 | (916) 319-2063 | |
| | Rep-4 | (916) 319-2004 | |
| | Dem-14 | (916) 319-2014 | |
| | Dem-18 | (916) 319-2018 | |
| | Dem-57 | (916) 319-2057 | |
| | Rep-60 | (916) 319-2060 | |
| | Dem-9 | (916) 319-2009 | |
| | Dem-22 | (916) 319-2022 | |
| | Dem-12 | (916) 319-2012 | |
| | Dem-79 | (916) 319-2079 | |
| | Rep-37 | (916) 319-2037 |
| | Dem-9 | (916) 319-2009 | |
| | Rep-68 | (916) 319-2068 | |
| | Rep-59 | (916) 319-2059 | |
| | Dem-7 | (916) 319-2007 | |
| | Dem-42 | (916) 319-2042 | |
| | Rep-3 | (916) 319-2003 | |
| | Dem-43 | (916) 319-2043 | |
| | Dem-27 | (916) 319-2027 | |
| | Dem-40 | (916) 319-2040 | |
| | Dem-22 | (916) 319-2022 |
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
calendar years and approved by a vote of 70% of both houses, and
only if the amendment enhances the ability of the institute to
further the purposes of the grant and loan programs.
Existing provisions of Proposition 71 provide
The act provides that the ICOC shall establish standards
that require that all grants and loan awards under the act shall be
subject to intellectual property agreements that balance the
opportunity of the state to benefit from the patents, royalties, and
licenses that result from basic research, therapy development, and
clinical trials with the need to assure that essential medical
research is not unreasonably hindered by the intellectual property
agreements.
This bill would require that intellectual property standards that
the ICOC develops shall include a requirement that each grantee and
the licensees of the grantee submit to the CIRM for approval a plan
that will afford uninsured Californians access to any drug that is,
in whole or in part, the result of research funded by the CIRM, and
would require that any plan subject to that approval shall require
that the grantees and licensees thereof sell drugs at a price that
does not exceed any benchmark price in the California Discount
Prescription Drug Program.
The act provides that the CIRM shall have 3 separate scientific
and medical working groups, including the Scientific and Medical
Research Funding Working Group, which, among other things, shall make
grant and loan award recommendations to the ICOC. Existing law
provides that, in order to ensure CIRM funding does not duplicate or
supplant existing funding, certain research categories shall not be
funded by the CIRM, except when at least 2/3 of a quorum of the
members of the Scientific and Medical Research Funding Working Group
recommend to the ICOC that such a research proposal is a vital
research opportunity.
This bill would, instead, only require a simple majority of a
quorum of the members of the Scientific and Medical Research Funding
Working Group to recommend to the ICOC that a particular research
proposal is a vital research opportunity.
Existing law establishes the Milton Marks "Little Hoover"
Commission on California State Government Organization and Economy, a
multimember body appointed by the Governor and the Legislature with
various duties that include making recommendations to the Governor
and the Legislature to promote efficiency in government operations.
This bill would require request the
commission to conduct a study of the governance structure of the
California Stem Cell Research and Cures Act. This bill would
, by July 1, 2009, require the commission to provide
that if the commission conducts the study, it shall, by July 1, 2009,
submit, to the appropriate committees of each house of the
Legislature, a report on the results of the study and recommendations
of ways the governance structure of the ICOC could better ensure
public accountability and reduce conflicts of interest, consistent
with the purposes of Proposition 71, and would require the commission
to make the report available to the public.
Vote: 70%. Appropriation: no. Fiscal committee: yes.
State-mandated local program: no.
THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:
SECTION 1. Section 125290.60 of the
Health and Safety Code is amended to read:
125290.60. Scientific and Medical Research Funding Working Group
(a) Membership
The Scientific and Medical Research Funding Working Group shall
have 23 members as follows:
(1) Seven ICOC members from the 10 disease advocacy group members
described in paragraphs (3), (4), and (5) of subdivision (a) of
Section 125290.20.
(2) Fifteen scientists nationally recognized in the field of stem
cell research.
(3) The Chairperson of the ICOC.
(b) Functions
The Scientific and Medical Research Funding Working Group shall
perform the following functions:
(1) Recommend to the ICOC interim and final criteria, standards,
and requirements for considering funding applications and for
awarding research grants and loans.
(2) Recommend to the ICOC standards for the scientific and medical
oversight of awards.
(3) Recommend to the ICOC any modifications of the criteria,
standards, and requirements described in paragraphs (1) and (2) above
as needed.
(4) Review grant and loan applications based on the criteria,
requirements, and standards adopted by the ICOC and make
recommendations to the ICOC for the award of research, therapy
development, and clinical trial grants and loans.
(5) Conduct peer group progress oversight reviews of grantees to
ensure compliance with the terms of the award, and report to the ICOC
any recommendations for subsequent action.
(6) Recommend to the ICOC standards for the evaluation of grantees
to ensure that they comply with all applicable requirements. Such
standards shall mandate periodic reporting by grantees and shall
authorize the Scientific and Medical Research Funding Working Group
to audit a grantee and forward any recommendations for action to the
ICOC.
(7) Recommend its first grant awards within 60 days of the
issuance of the interim standards.
(c) Recommendations for Awards
Award recommendations shall be based upon a competitive evaluation
as follows:
(1) Only the 15 scientist members of the Scientific and Medical
Research Funding Working Group shall score grant and loan award
applications for scientific merit. Such This
scoring shall be based on scientific merit in three separate
classifications-
on criteria including the following:
(A) A demonstrated record of achievement in the areas of
pluripotent stem cell and progenitor cell biology and medicine,
unless the research is determined to be a vital research opportunity.
(B) The quality of the research proposal, the potential for
achieving significant research, or clinical results, the timetable
for realizing such significant results, the importance of the
research objectives, and the innovativeness of the proposed research.
(C) In order to ensure that institute funding does not duplicate
or supplant existing funding, a high priority shall be placed on
funding pluripotent stem cell and progenitor cell research that
cannot, or is unlikely to, receive timely or sufficient federal
funding, unencumbered by limitations that would impede the research.
In this regard, other research categories funded by the National
Institutes of Health shall not be funded by the institute.
(D) Notwithstanding subparagraph (C), other scientific and medical
research and technologies and/or any stem cell research proposal not
actually funded by the institute under subparagraph (C) may be
funded by the institute if at least two-thirds
a simple majority of a quorum of the members of the
Scientific and Medical Research Funding Working Group recommend to
the ICOC that such a research proposal is a vital
research opportunity.
SECTION 1. SEC. 2. Section 125293 is
added to the Health and Safety Code, to read:
125293. (a) The intellectual property standards that the ICOC
develops shall include a requirement that each grantee and the
licensee of the grantee submit a plan to the California Institute for
Regenerative Medicine (CIRM) that will afford uninsured Californians
access to any drug that is, in whole or in part, the result of
research funded by the CIRM.
(b) The ICOC shall require submission of the plan required by
subdivision (a) before a drug is placed into commerce. The plan shall
be subject to the approval of the CIRM, after a public hearing and
opportunity for public comment.
(c) (1) Any plan subject to subdivision (a) shall include a
requirement that each grantee and any licensee of the grantee that
sells drugs that are, in whole or in part, the result of research
funded by CIRM and that are purchased in California with public funds
shall sell those drugs at a price that does not exceed any benchmark
price in the California Discount Prescription Drug Program (Division
112 (commencing with Section 130500)), as it exists on January 1,
2008.
(2) Paragraph (1) shall not preclude any public agency from
obtaining prices that are lower than the price determined as
described in paragraph (1) through negotiation, bulk purchasing, or
any other purchasing arrangement and shall not be construed to
conflict with, or preempt, any other provision of state or federal
law or regulation that would result in lower drug prices.
(d) For purposes of this section, "drug" includes any article
recognized in the United States Pharmacopeia or supplement thereof,
the National Formulary, or any supplement thereof, and any article
intended for the diagnosis, cure, mitigation, or prevention of
disease in humans or animals, or any article intended for use as a
component thereof, and shall include therapeutic products, including,
but not limited to, blood, blood products, cells, and cell
therapies.
SEC. 2. SEC. 3. (a) The
Legislature hereby requests the Milton Marks "Little Hoover"
Commission on California State Government Organization and Economy
shall to conduct a study of the
governance structure of the California Stem Cell Research and Cures
Act, an initiative measure approved by the voters at the November 2,
2004, statewide general election (Proposition 71), including the
membership of the Independent Citizens
Citizen's Oversight Committee and the relative roles of the
committee and the California Institute for Regenerative Medicine.
(b) By If the commission conducts the
study described in subdivision (a), the commission shall, by
July 1, 2009, the commission shall submit,
submit to the appropriate committees of each house of the
Legislature, a report on the results of the study required
requested by subdivision (a) and recommendations
of ways the governance structure of the Independent Citizen's
Oversight Committee could better ensure public accountability and
reduce conflicts of interest, consistent with the purposes of
Proposition 71. The commission shall make the report available to the
public.
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