Stem Cell Research Information + Impact

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1.: Friday, July 4, 2008 LAST STAND FOR CALIFORNIA STEM CELL PRO From: Stephen Meyer

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1.: Friday, July 4, 2008 LAST STAND FOR CALIFORNIA STEM CELL PRO

Posted by: "Stephen Meyer" Stephen276@comcast.net stephen_meyer_stemcells

Mon Jul 7, 2008 5:47 am (PDT)

Right now, we are losing.

Senate Bill 1565, a major attack on California's stem cell program,
will probably win.

SB 1565 has passed every hearing so far. There is only one hearing left,
the Assembly Appropriations Committee, July 16th, in the Capitol
building, Sacramento, fourth floor, room 4202, 8:00 in the morning.

Is there any way you can come to Sacramento to support California's
program? If so, I am formally inviting you right now. We need your
help.

Why is a bill attacking California's beloved stem cell program so
close to being passed?

In addition to being part of Republican Senator George Runner's
perpetual attack on embryonic stem cell research, the bill is a farewell
gift to Democrat Senator Sheila Kuehl.

The Senator is "termed out", term limits being one of the great
mistakes in the California legal system. Just when a Senator or
Assemblymember learns how to work their office correctly, they are
required to leave—while the lobbyists remain forever.

A genuinely beloved legislator, Senator Kuehl worked with all her might
to pass a law guaranteeing health care for all Californians. Her
visionary bill did not succeed, but every Democrat in office respects
her dedication and commitment, especially in health issues. There is
tremendous energy to give her a legislative success, on which to end her
career.

Unfortunately, the bill (SB 1565, Kuehl,Runner) is a subtle and
dangerous attack on our stem cell research program, and it is being
rushed through with almost no examination.

It is a complicated bill, not easily understood. But if Senator Sheila
wants it …

No, no!

Honor the Senator's contribution in other ways! Build a statue,
endow a park, name a school after her—but do not pass a bill which
could gut the California stem cell program.

What happens if we lose?

A good friend (and terrific fighter for the cause) tried to comfort me
the other day, reminding that even if we lost SB 1565, the research
would still go on. This is not our last stand, she pointed out.

True-- but we could lose the ICOC!

To me, that would be like getting an arm chopped off in a sword battle.
We can pick up the sword with our other hand, and of course we will.

But there is no more powerful fighting arm for cure than the Independent
Citizens Oversight Committee (ICOC).

The ICOC is led by Chairman Bob Klein, the man who gave his life savings
to fund the campaign for Proposition 71. The ICOC is Joan Samuelson,
founder of the world-renowned Parkinson's Action Network. Joan has
Parkinson's in an advanced stage. Sometimes the condition gets so
bad she has to lie down during the breaks at the meetings, but she will
never quit trying. The ICOC is Dr. Oswald Steward, leader of the
Reeve-Irvine Research Project, UC Irvine (and the Roman Reed Act),
tireless, soft-spoken, his life dedicated to finding a cure for
paralysis.

These and 26 more, our champions, are the real targets of the
legislation.

Remember, the bill wants the Little Hoover Commission to go to work on
the alleged "conflict of interest" in the California stem cell
program. It specifically names the ICOC.

The Little Hoover Commission not only analyzes a government program; it
also suggests and helps develop laws to fix the problems it finds.

The "problem" it is charged to solve is the alleged conflict of
interest in the governing board: the fact that the board members are
experts from their various fields, instead of politicians. (Personally,
I think this is an advantage. We have already benefited from this
expertise—like knowing how to get matching money from Institutions
applying for facilities grants, so $271 million became $1.15 billion,
almost four times the bang for the buck-- not to mention there are
careful regulations designed specifically to prevent a member from using
their power to advantage their home organization.

But the ICOC is the alleged conflict of interest the opposition is
always talking about.

The most likely way to solve this alleged "conflict of
interest"?

Remove the board which represents patients.

If we lose the fight, and SB 1565 becomes law, we could lose the ICOC.

Also, we definitely lose California's current stated preference for
embryonic stem cell research. That is already in the text of SB 1565, no
maybe's about it.

If the worst happens, and SB 1565 becomes law, is there any way to fight
the restructuring of the program?

Yes. But it will be like picking up the sword with our weak hand.

The Little Hoover Committee process is required to be public.

So, we must follow the process as best we can. If there is public
comment allowed, we must try to be there. If there are committees
needing volunteers, we must try to be on them, and I hope there will be
plenty of stem cell supporters involved—because we know the
opposition will be there.

The people who endlessly criticize us would like nothing better than to
be on a panel whose purpose is to "improve" the California
Institute for Regenerative Medicine—and perhaps to be on the
"new and improved" Board of Directors itself, the replacement
for the ICOC.

Think of our opponents. Now imagine them running our research program.

If we lose in the battle against SB 1565, the fight will still go on,
but it will be much harder, and we will be at a great disadvantage.

But we don't have to lose. There is still a way we can win.

We need to convince the legislature to take a closer look at what they
are considering.

They need to know not one stem cell research group supports SB 1565.

How do we get that message across?

Every patient advocate group that supported Proposition 71 needs to
write a letter opposing SB 1565.

Do you belong to a group that supports medical research?

If so, your group needs to send a hard copy letter on letterhead
stationery, stating your opposition to SB 1565.

These letters should be sent to:

Assemblymember ____________

State Capitol—Room ____

P.O. Box 942849

Sacramento, CA 94249

Assembly Appropriations Committee Members

Mark Leno - Chair Room 2114

Mimi Walters - Vice Chair Room 6031

Anna M. Caballero Room 5119

Mike Davis Room 2160

Mark DeSaulnier Room 4162

Bill Emmerson Room 4158

Warren T. Furutani Room 5144

Jared Huffman Room 4139

Betty Karnette Room 2136

Paul Krekorian Room 5135

Doug La Malfa Room 4164

Ted W. Lieu Room 3173

Fiona Ma Room 2176

Alan Nakanishi Room 5175

Pedro Nava Room 2148

Sharon Runner Room 5158

Jose Solorio Room 2196

We need those letters. If we lose the next committee hearing, the last
one—we can still try to convince Governor Schwartzenegger to veto
the bill, which will send it back to the Assembly and Senate for
reconsideration—which buys us time to get the facts to our leaders.

If you need time to get your group to write its letter, write your own
as a member of the group, and send that in the meantime.

Please do something today. A little hassle now will save a whole lot of
misery later on.

Finally, here are two position papers from the Americans for Cures
Foundation: a one-page summary of the bill, and a call to action.

Why we Oppose Senate Bill 1565

Restrictions Won't Solve the Problem & Will Discourage Investment

Senate Bill 1565 begins with a noble goal: access to therapies for those
who are uninsured. Unfortunately, the bill will have unintended and
potentially disastrous consequences. It will actually delay the
development of stem cell therapies that could reduce the suffering of
millions. Rather than increasing access to therapies for some citizens,
we believe the impact of this bill may be to deny access for all
citizens by discouraging the investment by private industry in the
development of stem cell therapies and cures. SB 1565 would restrict the
research which is the best hope yet for millions of people who suffer
from chronic illnesses, and millions of families who care for them. We
all strongly support access to lifesaving treatment for those who need
and want it. But we cannot fix the problem of access by tying the hands
of the California stem cell program, which is the beacon of hope for
developing these treatments.

Here are seven reasons you should oppose Senate Bill 1565.

1. This bill will discourage private industry from developing
cures. Currently, the law allows the California Institute of
Regenerative Medicine (CIRM) to provide companies with additional
incentives to develop therapies for "orphan" diseases such as cystic
fibrosis and Lou Gehrig's disease. SB 1565 will eliminate these
incentives, making it financially unfeasible for companies to pursue
therapies for rare diseases. By hobbling CIRM's ability to negotiate
terms, SB 1565 will further discourage the pursuit of therapies for
these uncommon diseases. SB 1565 abandons these patients and their
families.

2. SB 1565 claims to find conflicts of interest in the
Independent Citizens Oversight Committee (ICOC). This structure has been
studied by two California courts and three independent audits. These
studies declared the ICOC a convergence of expertise rather than a
conflict of interest. Elaborate restrictions are in place to prevent
Board Members from influencing decisions that might benefit his or her
institution. Our view is that SB 1565's proposal to study ICOC
structure again is redundant, and a poor use of taxpayer dollars. We
further question the wisdom of selecting a review group whose
conservative political views are well-known – in other words, an
organization whose independent, impartial credentials cannot be
verified.

3. While we believe in strong oversight of all state agencies,
there is no excuse to waste taxpayer dollars repeatedly investigating a
state agency that is a model of fiscal prudence. For example, CIRM's
skillful negotiation during the facilities grants process turned $271
million in public funds into $1.15 billion in total investment in stem
cell research.

4. SB 1565 claims to see a need to increase public
accountability. In fact, the CIRM has a high standard of openness. It
has already held over 100 public meetings. Opportunities for citizen
involvement abound and citizens routinely participate in Board
decisions.

5. SB 1565 is a direct contradiction of the will of voters
regarding embryonic stem cell research. Seven million voters said yes to
embryonic stem cell research in 2004 and SB 1565 would remove the
legislative preference for this lifesaving research. While recent
advances in alternative therapies are exciting, the vast majority of
scientists agree that embryonic research remains the gold standard and
is closer to the clinic.

6. By establishing an unfriendly environment for investment in
stem cell therapeutics, SB 1565 would diminish California's
leadership position in this cutting edge field. Biotech companies are
increasingly outsourcing jobs to more supportive environments in other
countries. California must continue to promote a healthy business
climate.

7. The CIRM already guarantees access to the uninsured. The
legislature's own non-partisan analysis of SB 1565 reads: "on
March 12, 2008, the ICOC issued draft revised regulations for grants to
for-profit entities to include a requirement that all plans must provide
access for uninsured Californians (emphasis added)…similar to the
language in SB 1565…"

Finally, here is the call to action from Americans for Cures Foundation:

"A few weeks ago, we asked you to help us stop the California
legislature from handcuffing promising and lifesaving research by
stopping Senate Bill 1565 (Keuhl-Runner). Unfortunately, the bill has
since passed through two Assembly Committees: Health and Judiciary. The
final step before a floor vote is a hearing in the Assembly
Appropriations Committee (contact information below.) We need you to act
now! Ask for a NO vote on SB 1565:

1. Please call the Appropriations Committee at (916) 319-2081.

2. Please call/fax/write as many of the Committee Members as you
can.

Please call/fax/write your own Assembly Member. (To find your Assembly
Member or State Senator, please click here
<http://192.234.213.69/smapsearch/framepage.asp> and enter your
address.)

The Appropriations Committee will hear the bill on July 16th, and so we
need your help right now. If you live near Sacramento, please consider
joining us in person to stand up for this research. (Let us know if you
can be there we'll keep you updated on time and place.)

We passionately support the goal of healthcare that is accessible and
affordable to all Californians. However, this bill will discourage
private industry from developing therapies and cures. Currently, the law
allows the California Institute of Regenerative Medicine (CIRM) to
provide companies with additional incentives to develop therapies for
"orphan" diseases such as cystic fibrosis and Lou Gehrig's disease. SB
1565 will eliminate these incentives, making it financially unfeasible
for companies to pursue therapies for rare diseases. SB 1565 abandons
these patients and their families.

If SB 1565 passes, entrepreneurs and private capital will likely remain
on the sidelines in the fight for cures. That means a delay in bringing
cures and therapies to Californians; even worse, therapies for some
conditions may never be developed.

· Opposing SB 1565 keeps therapy development on the fastest track for
cures.

· Opposing SB 1565 is the best vote for taxpayers because new
therapies can reduce direct and indirect economic costs.

Opposing SB 1565 is the best vote for families and patients who suffer
every day from devastating chronic conditions.

We must accelerate investment in CIRM technologies for the benefit of
every Californian. And that is why we need you to call now.

1. Please call the Appropriations Committee at (916) 319-2081.

2. Please call/fax/write as many of the Committee Members as you
can.

Please call/fax/write your own Assembly Member. (To find your Assembly
Member or State Senator, please click here
<http://192.234.213.69/smapsearch/framepage.asp> and enter your
address.)

3. Ask your friends and family to do the same.

After you have done your best to stop SB1565, please let us know what
you were able to accomplish. (inform@americansforcures.org
<mailto:inform@americansforcures.org> )

Thank you for being on the frontlines in the fight for cures.

Warm regards,

Amy Daly & ConstanceMcKee, co-directors, Americans for Cures Foundation

Assembly Committee on Appropriations

Committee Members

District

Phone

E-mail

Mark Leno - Chair

Dem-13

(916) 319-2013

Assemblymember.leno@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.leno@assembly.ca.go\
v>

Mimi Walters - Vice Chair

Rep-73

916) 319-2073

Assemblymember.walters@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.walters@assembly.ca\
.gov>

Anna M. Caballero

Dem-28

(916) 319-2028

Assemblymember.Caballero@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Caballero@assembly.\
ca.gov>

Mike Davis

Dem-48

(916) 319-2048

Assemblymember.Davis@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Davis@assembly.ca.g\
ov>

Mark DeSaulnier

Dem-11

(916) 319-2011

Assemblymember.DeSaulnier@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.DeSaulnier@assembly\
.ca.gov>

Bill Emmerson

Rep-63

(916) 319-2063

Assemblymember.emmerson@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.emmerson@assembly.c\
a.gov>

Warren T. Furutani

Dem-55

(916) 319-2055

Assemblymember.Furutani@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Furutani@assembly.c\
a.gov>

Jared Huffman

Dem-6

(916) 319-2006

Assemblymember.Huffman@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Huffman@assembly.ca\
.gov>

Betty Karnette

Dem-54

(916) 319-2054

Assemblymember.Karnette@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Karnette@assembly.c\
a.gov>

Paul Krekorian

Dem-43

(916) 319-2043

Assemblymember.Krekorian@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Krekorian@assembly.\
ca.gov>

Doug La Malfa

Rep-2

(916) 319-2002

Assemblymember.lamalfa@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.lamalfa@assembly.ca\
.gov>

Ted W. Lieu

Dem-53

(916) 319-2053

Assemblymember.Lieu@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Lieu@assembly.ca.go\
v>

Fiona Ma

Dem-12

(916) 319-2012

Assemblymember.Ma@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.Ma@assembly.ca.gov>

Alan Nakanishi

Rep-10

(916) 319-2010

Assemblymember.nakanishi@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.nakanishi@assembly.\
ca.gov>

Pedro Nava

Dem-35

(916) 319-2035

Assemblymember.nava@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.nava@assembly.ca.go\
v>

Sharon Runner

Rep-36

(916) 319-2036

Assemblywoman.Runner@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblywoman.Runner@assembly.ca.g\
ov>

Jose Solorio

Dem-69

(916) 319-2069

Assemblymember.solorio@assembly.ca.gov
<mip://0623b3d8/?view=cm&tf=0&ui=1&to=Assemblymember.solorio@assembly.ca\
.gov>

Authors

District

Phone

E-mail

Senator Sheila Kuehl

Dem-23

(916) 651-4023

senator.kuehl@sen.ca.gov <mailto:senator.kuehl@sen.ca.gov>

Senator George Runner

Rep-17

(916) 651-4017

Via website: http://cssrc.us/web/17/contact_us.aspx
<http://www.americansforcuresfoundation.org/lists/lt.php?id=cUVQWwwAVwAZ\
AgcYCgoAVlY%3D>

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