Archive for July, 2009

A GLOBAL SHOUT: How Will You Celebrate Stem Cell Awareness Day?

By Don C. Reed

September 23 is the world’s second annual Stem Cell Awareness Day (SCAD).

This year, we have a lot of reasons to celebrate. Just to name three:

1. President Barrack Obama authorized a relaxation of America’s restrictions on federal funding of embryonic stem cell research. The revised NIH guidelines have just been released; they are sensible, and can be worked with. I was worried, because the opposition had mounted a major national campaign to try and derail the research; but they did not succeed. Hope won; fear lost. This will help every state that has a program or wants to start one.

2. Despite relentless opposition, the California Institute for Regenerative Medicine (CIRM) continues to “go forward”, as Christopher Reeve always said. The CIRM has already awarded $761 million in research and facilities grants—and has brought in roughly one billion dollars more additional funding in matching grants and donations. An incredible 300 (three hundred!) published scientific papers resulting from CIRM-funded work brings us incrementally closer to cures for chronic disease and disability.

3. Assuming no last minute glitches, the world’s first human trials with embryonic stem cells will take place in a matter of days: Geron’s and Dr. Hans Keirstead’s long-awaited spinal cord injury effort, to try and ease the cruel grip of paralysis. (Readers of this column may remember this work was originally funded by California’s Roman Reed Spinal Cord Injury Research Act, named after the author’s son.) Although this first set of trials is primarily a safety test, the excitement is palpable; around the world people suffer every day, without the hope of cure, and now, for the first time, there will be actual official, verifiable tests of a way to repair the damaged nerves inside newly injured people…

So– how should we celebrate Stem Cell Awareness Day?

Last year, the main event of the first Stem Cell Awareness day was an Australian/Californian joint video conference, with scientists on two continent’s bringing the research to world attention.

And this year?

The California Institute for Regenerative Medicine (CIRM) is once more playing a coordinating role for Stem Cell Awareness Day activities — here is a note from Ellen Rose, who is helping to coordinate those events.

“Stem Cell Awareness Day will be celebrated on Wednesday, September 23, 2009. Events are being planned in California and around the world to engage the public in a variety of activities that raise awareness of stem cell research.

“CIRM is helping to coordinate a series of public events in California as well as offering an exciting classroom opportunity on that day for high school students and science teachers.

“Helping to educate and inform the next generation of scientists is an important part of CIRM’s outreach mission. Science educators are on the front lines of that broader effort and CIRM hopes to support these efforts by making stem cell researchers available to visit high school science classes to present a module on stem cell science and/or take questions during class on September 23rd.

“If you are interested in participating in this state-wide activity, and would like us to match a stem cell scientist with one or more of your classes, please email Ellen Rose at CIRM: erose@cirm.ca.gov. We will be matching local researchers with classrooms in the fall.”

There will be more from Ms. Rose and the California Institute for Regenerative Medicine as the day approaches.

Where will you be on September 23?

I personally plan to celebrate the day at the Genetics Policy Institute’s World Stem Cell Summit, in Bethesda, Maryland. I have no idea what GPI Founder Bernie Siegel has in mind by way of noting the day, but, knowing him, it will be special. For the silver-haired promoter of regenerative medicine, every day is Stem Cell Awareness Day!

If there is any way you can make it for the World Stem Cell Summit, folks, September 21-23, I absolutely recommend it. GPI stem cell events are not to be missed. I have been to them all, and every year I think, there is no way he can top this one—and then the next one comes along! Last year’s Summit was at the birthplace of stem cell research itself, Madison, Wisconsin– this one will be at in the hometown of the FDA, Bethesda, Maryland: at Johns Hopkins University, hosted by Maryland’s State University system.

A fact sheet on the event follows at the bottom of the page: for more information, click on http://www.worldstemcellsummit.com .

Now– what else can we do on September 23—Stem Cell Awareness Day—how can we make it memorable?

If you belong to a group, is there something you can do to mark the day? Maybe a little party, or that low-key fundraiser you have been meaning to do?

As you know, Proposition 71 was supported by more than 70 groups, large and small— medical, scientific, research or disease awareness groups– do you belong to one of those?

Could you contact the leadership, ask if they could announce Stem Cell Awareness Day, send an e-blast to the membership, reminding them about September 23rd?

Celebrating Stem Cell Awareness Day on September 23 is important. We need to remember how far we have come, and the attacks we have weathered. The hard work is paying off.

We are the patients and families, the scientists, doctors and therapists, the government leaders and taxpayers, everyone who believes that cure may come.

Think what we have accomplished.

Can you name any other medical advancement in the history of the world that has been so driven by patient activism?

It has been an uphill battle all the way: countering the forces of inertia, fear, and ignorance.

If you are an advocate, you know. Thousands of people labored long years to get us where we are today. Some are no longer with us. We should remember their sacrifice, honor their memory: appreciate the good that has been accomplished, the hope for what is to be, the future we can only imagine—as we fight to make it possible.

Think of Michigan, Texas, New Jersey, Connecticut, Maryland, Georgia, South Dakota and more—tremendous fights, some we won– and some we lost.

But we are going forward all the time. Even some of the battles we lost brought light as well as heat. True, we have not won in every state: not yet. Some states are disaster areas in terms of research freedoms, with actual jail sentences threatening stem cell scientists.

But it will not always be that way. The people of every state love their families exactly as we do—when cures start to come, leaders everywhere to face reality.

A movement has been born, which will one day touch the lives of everyone on Earth.

You are a part of that effort.

What will you do on September 23rd?

And the ultimate? If I can dream for a moment…

Do you remember the old great movie, NETWORK? In it, the announcer (Peter Finch, in an Academy Award-winning performance) asked everyone to lean out the window of their house, and yell:

“I’m mad as Hell– and I’m not going to take it anymore!”

My dream is quieter than that, but bigger, much bigger.

What if everyone who could be affected by stem cell research (everybody on earth!) would stop what they are doing, just for a moment, and just go outside, in front of their homes or places of work.

That’s all. Just go outside. Every street on Earth would be full. For a moment, all would be silent, as we realized the power of our numbers.

Visualize all of us, how ever many hundreds of billions of people that is, all stepping out of our houses, coming right out in front, families, friends, neighbors, all of us.

The smallest whisper would echo around the world, uniting us all. Think of that.

If we all just said the words of Christopher Reeve, very softly:

“Go Forward.”

If it came from all of us, those two words would add up, becoming a roar that would build and build until it could be heard on Mars—a global shout.

Even the most stubbornly obtuse politician could never ignore us again.

September 23rd. Celebrate Stem Cell Awareness Day. And make a little noise.

Contact your local paper, let them know what you have in mind. Remember, 70% of everything in a newspaper is “planted”: put there by the subjects of the article. Just make a one-page letter about your event, large or small. Call them first, tell them about it, ask if you can send them a news-release. They will always say yes, because they will at least want to consider it. Then you e-mail the news-release, and chances are, they will either send a reporter to cover your event, or at very least run your announcement.

In either case, you won; you advanced awareness of stem cell research.

And that is the purpose of Stem Cell Awareness Day: this coming September 23rd.

How could we celebrate this day? Drop a line to Karen Miner and me at stemcellbattles@aol.com, and share your thoughts.

Now, here is that Fact Sheet I mentioned, on the World Stem Cell Summit.


Conference Overview:
Presented by the Genetics Policy Institute (GPI), the Summit is hosted by Johns Hopkins University, the University System of Maryland, Maryland Department of Business and Economic Development, Maryland Technology Development Corporation and Maryland Stem Cell Research Fund.

With more than 150 sponsors, supporting organizations and media partners, the World Stem Cell Summit is the flagship, networking event, bringing together the founding visionary researchers, clinicians, business pathfinders, key policy-makers, regulators, advocates, experts in law and ethics to present compelling presentations, share information, and together chart the future of regenerative medicine.
The comprehensive, multi-track program covers all areas of stem cell science (hESC, adult and iPS), disease models, drug discovery, tissue engineering, scaffolds, bioreactors and nanotechnology. Five panels covering progress reports for cancer, diabetes, spinal cord injury and multiple sclerosis, Parkinson’s/ALS/Neurological Disorders and cardiovascular disease. Numerous panels cover commercialization, funding, economic development, Federal agencies’ perspectives, law and ethics.
Conference Co-Chairs
Curt Civin, University of Maryland; Chi Dang, Johns Hopkins University; Linda Powers, Toucan Capital Corp.; Karen Rothenberg, Maryland Stem Cell Research Commission; Bernard Siegel, Genetics Policy Institute
Sample Conference Speakers
Leading scientists: Irving Weissman (Stanford), Anthony Atala (Wake Forest), Ronald MacKay (NINDS), Sally Temple (NY Neural Stem Cell Foundation), Stephen Minger (Kings College), Jeanne Loring (Scripps Research Institute), Doris Taylor (Minnesota)

Key Policy Leaders: Gov. Martin O’Malley (Maryland), Gov. Jim Doyle
(Wisconsin), Bob Klein (California Institute for Regenerative Medicine), James Greenwood (Biotechnology Industry Organization)

Business Leaders: Mahendra Rao (Invitrogen), Alain Vertes (Roche), David Amrani (Baxter), Martin McGlynn (StemCells, Inc.), Michael West (BioTime), Jane Lebkowski (Geron), Ian Ratcliffe (Stemgent), Paul Grayson (Fate Therapeutics).

Medical Philanthropy: Alan Lewis (JDRF)

Conference History:
The 2009 World Stem Cell Summit marks the fifth annual summit presented by GPI. Past event partners include: University of Wisconsin-Madison Stem Cell & Regenerative Medicine Center, WiCell Research Institute, Harvard Stem Cell Institute, Stanford University, Baylor College of Medicine and the United Nations.
Conference Attendees:
The Summit will attract more than 1,200 of the most influential stem cell stakeholders from 25 countries representing the fields of science, business, policy, law, ethics and advocacy. 100 plus internationally renowned speakers will be present—producing a unique international network designed to foster collaborations, economic development, technology transfer, commercialization, private investment and philanthropy.

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In yesterday’s article (July 8, 2009) “How Not to Kill A Stem Cell Program in Three Easy Steps”, I stated that former assemblywoman Sharon Runner had previously been a member of the Little Hoover Commission.

However, an email received this morning from Stuart Drown, executive director of the Little Hoover Commission, informs me that former Assemblymember Sharon Runner “has never been a commissioner of the Little Hoover Commission.”

I appreciate his taking the trouble to point out my error.

Public discourse depends on accuracy, and I should have been more careful.

I extend sincere apologies to Ms. Runner, and will run this retraction on my weblog, http://www.stemcellbattles.com today.

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How Not to Kill a Stem Cell Program in Three Easy Steps

By Don C. Reed

Check out Alex Philippidis’s scoop article:

“The chair of California’s state Senate Health Committee, Elaine Alquist (D-San Jose) said through a spokesman… she will wait until 2010 to introduce legislation to restructure the governance and some operations of CIRM.”— “Chair of California’s Health Committee Will Wait Until 2010 to Introduce CIRM-Altering Bill”. (http://www.genomeweb.com/print/919873?page=show) BioRegion News, July 6, 2009

This is so important. Remember the Little Hoover Commission’s laundry list of changes the critics want made to the California stem cell program?

California Senator Elaine Alquist, (D-San Jose) has been considering adding some of those changes to one of her bills already in progress, probably Senate Bill 343.

However, the budget crisis currently needs her full attention. Sensibly, she is putting off her decisions on the bill to change the stem cell program.

The Senator will have time to decide which changes are worth including in her bill.

Also, we in the patient advocacy community now have time to get ready.

There is a whole laundry list of changes offered in the Little Hoover Commission Report, 84 pages of them: some are worth considering, others serve no useful purpose, a few could do actual harm–

–and one, the plan to politicize the Independent Citizens Oversight Committee (ICOC), is a poisoned apple in the lunchbox.

It would be a disaster to split the ICOC and give control over its membership to the Governor of California.

Why? Consider the Governor’s power.

We have seen the good that a champion of stem cell politics can do in that office. Time and again, Governor Schwarzenegger stood up for stem cell research in the Golden State. He supported Proposition 71 before California voted it into law; he was there for us in the grinding early years of lawsuits, even authorizing a loan of $150 million to the program, so it could begin. Governor Arnold Schwarzenegger has earned the thanks of a grateful nation for his steadfast support of the potentially life-saving research.

But what about an opponent?

If suggestions by the Little Hoover Commission become law, another Governor could easily undermine the world’s largest source of embryonic stem cell research funding.

Here is how it could be done.

First, remember the governing board of the California stem cell program, the Independent Citizens’ Oversight Committee? Twenty-nine members, appointed by a variety of leaders, so no single individual can run the show. At present, the Governor appoints 5 of 29 members, so that he influences the makeup of the Committee, but cannot dominate it.

But what if the Governor got to pick three-fourths of the committee?

All he or she would have to do is put opponents of research on the board of directors.

A committee with a majority of research opponents could decide to not spend the money; or, use their majority to vote to spend it on research supported by the Religious Right—or they could just say, sorry folks, California can’t afford it—and let the program die.

For this nightmare to occur, three changes would be required.

1. Make the Committee small.
2. Shorten their terms in office, so they could not become independent.
3. Allow a super-majority of the now-small committee to be chosen by the Governor.

This is exactly what the Little Hoover Commission recommends.

The following quotations are taken directly from the Little Hoover Commission Report.
They recommend the following:

1. “…Decrease the size of the board to 15 members…
2. Reduce terms to four years for all new members….
3. Allow the governor to appoint 11 (of 15—DR) members…”

Could I be worried for nothing? Quite possibly.

I love the California stem cell program.

When the meetings begin and Melissa King announces the Pledge of Allegiance, saying, “Please stand if you are able”, and we put our hands on our hearts, I feel so proud to be an American, like looking up at the statue of Liberty. And remember what is written at the base of that immortal statue, in Emma Lazarus’s immortal words?

It does not say, “Give me your strong, your wealthy, your well-established…” No. It says in words we dare not forget:

“Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door!”

Like a living extension of the statue’s promise, the California Institute of Regenerative Medicine, or CIRM, reveals democracy’s strength: people working together to day find a cure for suffering, assisting those who have been told, there is no hope: people like my paralyzed son Roman, and my sister Barbara, who has cancer.

Until the day comes when I cease to care about my family, I will always be proud of the CIRM, an institution dedicated to the search for cure.

Also, if I sometimes seem defensive, that might be because the California stem cell program has endured non-stop attack since its inception. The critics have come at us from every angle, hitting us in big ways and small: lawsuits tried to crush us out of existence altogether; others were semi-harassments, endless new laws tried to tie our hands, multiple audits and repetitive investigations worked diligently to find something—anything—wrong. We emerged from the numerous trials by fire just fine, but sometimes it felt like that ancient Chinese torture, the death of a thousand cuts.

And our most relentless opponent? Senator George Runner (R-CA, district 17) is a religious conservative (his website describes him and his wife Sharon Runner as founders of “Desert Christian Schools”) bitterly opposed to early stem cell research. He has been called the “virulently anti-embryonic stem cell Republican George Runner” by the Los Angeles City Beat, (March 24, 2005). Mr. Runner opposed Prop 71 since before it was voted into law, and ever since. He has authored or co-authored numerous bills (7, if memory serves) attempting to revise and re-write our stem cell program.

His most recent bill (SB 1565, vetoed by Governor Schwarzenegger) contained a provision removing California’s preference for embryonic stem cell research, and requested the Little Hoover Commission (LHC) to “study” the California stem cell program, offering ways to fix its alleged problems—including “conflict of interest, real or perceived”– by making up a new state law or laws.

His newest bill lost (as had the other six) but the LHC decided to go ahead anyway.

And who was serving on the Little Hoover Commission, when it made its decision to go ahead with its plans to change California stem cell program?

Senator George Runner’s wife, former Assemblywoman Sharon Runner.

Is that a conflict of interest, that Senator Runner’s wife helped make a decision her husband wanted? It certainly could be “perceived” as one.

What if Senator Runner, Assemblywoman Runner, and/or their ideological colleagues were in charge of the California stem cell program? Can anyone believe they would not use their power to alter what they so clearly despise?

In about six months, Senator Alquist will decide which of the Runner-inspired
Little Hoover Commission recommendations to put into her possible new law.

Some of the proposed changes may be unconstitutional.

According to California law, even if lawmakers do not like a voter initiative, they do not have the legal right to overthrow it: they may only make minor adjustments, improvements which “further the purpose” of the initiative.

The people’s voice must be respected, and the initiative process is the purest form of democracy. Prop 71 was begun by the people, not the legislators; it was debated, fought for (and against), and then we had the vote.

Only another initiative can now legally alter its purpose. Major changes—like removing the independence of the ICOC—may only be done by another initiative. Two CIRM-connected law firms stated that at least some of the LHC changes may violate California law. The LHC acknowledges that possibility.

The Little Hoover Report raises a long list of objections, many worth discussing. Certainly we can find ways to improve anything, not only the California stem cell program, but also the Little Hoover Commission, or either political party, even democracy itself. (Remember Winston Churchill’s great comment that “Democracy was the worst system of government, except for all the others–”?)

Change is a part of life. But some changes are deal-breakers, so extreme they destroy the whole purpose—like subtracting the power of the vote. Without the right to vote, and the power to uphold a vote once taken, there is no democracy.

Politicizing the ICOC is a deal-breaker: a line which must never be crossed.

If the ICOC can be made a political tool, to be used at the whim of the next governor, we lose the independence of science which was the reason for Prop 71’s existence.

Senate Majority Leader Dean Florez (D-16th district) said it best:

“…I am concerned about the Commission’s attempt to shift power over the agency to the Governor. Like the Little Hoover Commission itself, CIRM was designed to be an independent agency. Proposition 71 therefore dispersed appointment authority to the Governor, the Lieutenant Governor, the Controller, the Treasurer, the Legislature, and UC Chancellors. By concentrating appointment authority in the Governor, the Commission would undermine the careful and deliberate balance struck by Proposition 71. (emphasis added—DR) In a controversial area like stem cell research, such a change would threaten the independence that CIRM needs to ensure the success of its mission.”—Senator Dean Florez, Majority Leader, July 6, 2009

Is the CIRM against all changes, as some critics have implied?

Not at all. Every bill that has been offered to change the program has been considered by the ICOC board, and many of their better elements have been adopted. This strategy of cooperating with the legislature and implementing needful change is healthy, and should continue.

The next meeting of the ICOC legislative subcommittee, in fact, Thursday, July 16th, will be to consider the suggestions of the Little Hoover Commission. Judging by past history, it is an easy prediction that their recommendations will receive serious consideration, and some will become part of the program.

Change must be done carefully; it is seldom as simple as it looks. For instance, the LHC suggests hiring more employees by removing the 50 employee cap. However, it offers no ideas on how the new employees will be paid. The LHC must surely be aware there is a 6% limit on the amount of CIRM money that can be spent on staff, that limit having been imposed so that the maximum amount of funding can go to research. I am all in favor of hiring more folks to help with the chores, but where is the money to pay them?

The stem cell program is a triumph. Despite relentless opposition, it has done more than survive: it has thrived. It brought in more money from outside sources ($900 million in contributions) than it spent in tax dollars ($732 million); provided new jobs at a time when much of the economy is stagnant or worse: made California the stem cell research center of the world, and brought us closer to cure for chronic disease and disability.

In short, the California Institute for Regenerative Medicine is doing exactly what Proposition 71 promised—and what we voters hired it to do.

We do ourselves no favors by messing with success.

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