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1.: ON THE DEFEAT OF SENATE BILL 1565 From: Stephen Meyer

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1.: ON THE DEFEAT OF SENATE BILL 1565

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

Tue Sep 30, 2008 5:57 am (PDT)

ON THE DEFEAT OF SENATE BILL 1565

In the middle of the Wall Street chaos yesterday, as I sat watching CNN,
wondering if I was witnessing the collapse of Western civilization, the
telephone rang.

It was Amy Daly, co-executive director of Americans for Cures.

"I have news," she said, "on SB 1565."

Well, okay, I was sitting down anyway. More bad news would just fit with
the rest of the day.

Senate Bill 1565: we patient advocates had been fighting that bill for
the past eight months—through six committee hearings in the
California Assembly and Senate-- losing every step of the way.

SB 1565 (Kuehl, Runner) was another bill attacking California's stem
cell program: the fifth, if memory serves. Since Proposition 71 was
voted into law, it has been under constant attack, from both lawsuit and
legislation.

The bill's primary author, Senator Sheilah Kuehl, is a smilingly
terrifying opponent. Not only is she tough to go against because she is
strong, experienced, and intelligent, but she is also a good person. It
is tough going against someone you genuinely like.

Her main purpose in the bill was noble: to guarantee that any treatments
developed through the stem cell research would be made available at low
cost to the uninsured-- but the CIRM (California Institute for
Regenerative Medicine) already agreed with that. Even she acknowledged
it, stating that the CIRM and she were "on the same page" with
the access issue. She wanted it in state law, she said, not a statute
which might be changed.

Unfortunately, the bill also had a poison-pill amendment, inserted by a
well-known enemy of the research: Senator George Runner, described by
one Los Angeles newspaper as a "virulently anti-embryonic stem cell
research Republican". The Runner Amendment would remove
California's preference for embryonic stem cell research, which was
the reason we voted for Prop 71 in the first place.

That anti-embryonic provision made the bill a threat to the new science
all across America. Can't you just hear the opposition? "Even
California rejects embryonic stem cell research", they would say,
"why should we change the Bush restrictions?"

I was braced for bad news. Politically, the safe thing for Governor
Schwarzenegger was to sign the bill. He had nothing to gain by standing
up for us, and much to lose. Consider: because of budget problems, he is
facing a possible recall, and needs the support of every legislator. All
he had to do was sign one bad bill, and this one did not even look like
a bad bill, on the surface.

"The Governor vetoed it", said the voice on the phone.

Wow. Just like that.

Arnold Schwarzenegger had come through for stem cell research once
again.

By this act of political courage, the attempt to remove California's
priority for embryonic stem cell research had failed.

The fight will go on, of course.

The bill did achieve one of its goals; an "efficiency group",
the Little Hoover Commission will be studying the stem cell research
governance board, the Independent Citizens Oversight Committee: to see
if there are ways to eliminate conflict of interest, whether "real
or perceived".

But I am not worried about that. We will prevail. The Independent
Citizens Oversight Committee is fantastic, and can withstand the closest
scrutiny.

There will be public meetings; patient advocates will be there. If there
is a citizen committee, patient advocates should try to be on it,
instead of only those who oppose the program. I will be there, of
course, and will report back to you, whatever happens. If the Little
Hoover Commission develops a new law or initiative against us, I will
let you know about it early, so we can protect California's great
gift to the world.

Because we are fighting for something shining. I had a glimpse of it, a
few days ago.

I wish you could have been there, at UC Davis, September 25th, 2009.

We were in a tall, barn-like structure, formerly a fairgrounds hall, and
just as it had been in those days, today it was full of happy people.

From this day forward, that building would be ennobled: it was now
officially the UC Davis Institute for Regenerative Cures.

Dr. Claire Pommeroy, beaming with pride, welcomed us.

On the stage were: UC Chancellor Larry Vanderhoef; California State
Senator Darrell Steinberg; the Honorable Doris Matsui, U.S. Congress;
Judy Roberson, President of the Northern California Chapter of the
Huntington's Disease Society; Jan Nolta, Ph.D., director of the
brand new institute; Bob Klein, whose leadership made the funding for
the project possible in the first place— and two parents, fighting
for their children's lives.

It was a time of triumph, because many people had worked hard for years
to bring together the money, knowledge, and will to make this happen.

It was also a reminder why our work must go forward.

Those parents, Keven and Teresa Partington, had two adorable little
blonde blue-eyed two-year-old twins, full of energy, seemingly in
boundless health.

But both children were ill with a progressive disease called cystinosis,
which attacks the eyes and the kidneys, and may take life as well.

They are why we fight.

Judy Roberson spoke of losing four members of her family to
Huntington's disease, and of the continuing struggle to advance
research for cure.

She is why we fight, inspired by her indomitable will, and example.

Bob Klein spoke, telling the story of a cab ride with Paul Berg, winner
of the Nobel Prize for his work with recombinant DNA, which was attacked
by the same arguments used against embryonic stem cell research, and was
almost banned. Even when it was allowed to go forward, the prediction
for failure was plain—nothing would come from it for fifty years, if
ever.

That was 1977.

In 1978, just one year later, DNA research made artificial human
insulin, which as Bob put it, "keeps my son alive today."

The research is for people like my paralyzed son, Roman (he was quoted
again and again throughout the day, whenever people would say the
official motto of the CIRM "turning stem cells into cures",
which he wrote), and my sister Barbara, who suffers from cancer and
leukemia. She had adult stem cells taken from our brother David (mine
did not match) and that gained her about a year of remission. It was
very definitely not a cure, and the cancer has returned-- but it gained
her time.

Those who think the California Institute for Regenerative Medicine only
funds embryonic stem cell research should visit the UC Davis Institute,
where the majority of research focuses on adult cells. The reason for
this is simple: adult stem cell research has had several decades head
start on embryonic, and is closer to the stage where it can help people.

Which is better, adult or embryonic stem cells? To my mind, the answer
is both. Whichever works, is the one we should use, and the answer will
vary from use to use.

UC Davis will be mounting a study to investigate which sort of stem
cells work best for which purpose.

When one of the speakers, Senator Steinberg, had to leave, Claire
Pommeroy gave him the most graceful exit, shoo'ing him out in the
most cheerful way, with a compliment:

"Go back to the Capitol and do good for the people-- like you always
do."

That was right and proper. Sacramento is the capitol of California's
hopes and dreams.

And at the very last, Dr. Pommeroy, member of the ICOC, said something I
hope Senator Kuehl will hear:

"It is important to point out, that because stem cells have the
potential for addressing some of society's most daunting health
challenges, UC Davis recognizes its responsibility for delivering any
therapies it develops in a fair and equitable way. We are committed to
helping ensure that the cures will be affordable to all
Californians."

Sheilah Kuehl's bill did not pass. But the Senator raised a vital
issue, that every family, even without insurance, deserves access to the
best medical care modern science can provide. Language providing for the
uninsured is now an official part of the California Institute for
Regenerative Medicine.

Her efforts brought us closer to universal health care.

Everybody won.

Thank you, California.

Don C. Reed
Sponsor, Roman Reed Spinal Cord Injury Research Act
co-chair, Californians for Cures
Vice President, Public Policy, Americans for Cures

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