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Archive for March, 2010

“ROMAN’S LAW: First Hearing Set

FIRST HEARING: RENEW ROMAN’S LAW, HELP END PARALYSIS! 

Mark your calendar! Tuesday, April 13, Room 4202, 1:30 PM, Sacramento Capitol

Dear Supporter of Research for Cure:

We need a letter from you. Why? California’s Roman Reed Spinal Cord Injury Research Act of 1999 (named after my paralyzed son) is up for renewal this year. This law paid for the first state-funded embryonic stem cell research in America, re-insulating damaged spinal nerves. Laboratory rats so badly paralyzed they could only drag themselves are scampering now; the study may go to human trials this Summer with Geron. The same research may also help cure Spinal Muscular Atrophy, (SMA, a vicious condition which kills children, often before the age of two), Multiple Sclerosis (MS), and other disorders.

The renewal bill has its first hearing April 13th, 1:30, Sacramento Capitol, Room 4202. Come if you can; support us with letters and email, even if you cannot join us in person.  Remember, if a bill is defeated in just one committee, it is dead. So help us now.

Please write to: Assemblyman William Monning, Assembly Health Committee Chair, California State Assembly, State Capitol Sacramento, CA 95814, with CC e-mail to: ryan.spencer@asm.ca.gov,  and the committee members below.   

“Roman’s Law” has helped train new scientists with fellowship grants, and assisted veterans to develop new approaches, from a variation of the Petri dish to pioneering new methods of rehabilitation and repair. In addition to 175 published scientific papers, two patents pending which may advance the biomedical industry, and several major scientific breakthroughs, our research brought new money to California.

Here’s how it works:

The program spends $1.5 million a year, but also attracts matching grants from the National Institutes of Health and other sources. Our total funding of $14 million was matched by $60 million from out of state—new jobs and revenue for California.  

But you know how tough the situation is in Sacramento!  The last time our law was up for renewal, we received virtually unanimous approval—a yes vote from every Assemblymember and Senator except one! This year, because of the financial thunderstorms in Sacramento, the votes will be very close, and could go either way.

 “Roman’s Law” is beautiful; we must not let it die. Senator Alberto Torrico (D-Fremont) is leading the charge: do not let him fight alone. Hearings begin in April. He needs support from individuals and groups everywhere—paralysis knows no boundaries.

Want to see the program?  Go to http://www.reeve.uci.edu/Research/RomanReed.aspx

Letters are best, but emails are good too. Group endorsements are wonderful, but if you cannot get approval through the group’s process in time, you can write as an individual member of the group, for purposes of identification: that does not commit your group.

Even the shortest letter will help: “My family supports AB 1931, the renewal of the Roman Reed Spinal Cord Injury Research Act” has impact—if you send it.

On behalf of every person in a wheelchair, I ask your help. Thank you, 

Don C. Reed

Citizen-sponsor, Roman Reed Spinal Cord Injury Research Act

FIRST HEARING SET FOR ROMAN REED ACT RENEWAL: AB 1931

Tuesday, April 13th, 1:30 afternoon, Room 4202.

The Assembly Health Committee is chaired by Assemblyman William Monning. His Address is:  The Honorable William Monning, Chair, Assembly Health Committee, State Capitol, Room 6005, Sacramento, CA 95814

Please send a hard copy letter of support to him, with email copy to the members. For more information, contact Don Reed at: diverdonreed@pacbell.net

Nathan Fletcher – Vice Chair

Assemblymember.Fletcher@assembly.ca.gov

Tom Ammiano

Assemblymember.Ammiano@assembly.ca.gov

Wilmer Amina Carter

Assemblymember.Carter@assembly.ca.gov

Connie Conway

Assemblymember.Conway@assembly.ca.gov

Hector De La Torre

Assemblymember.DeLaTorre@assembly.ca.gov

Kevin de Leon

Assemblymember.deLeon@assembly.ca.gov

Bill Emmerson

Assemblymember.emmerson@assembly.ca.gov

Mike Eng

Assemblymember.Eng@assembly.ca.gov

Ted Gaines

Assemblymember.Gaines@assembly.ca.gov

Mary Hayashi

Assemblymember.Hayashi@assembly.ca.gov

Edward P. Hernandez

Assemblymember.Hernandez@assembly.ca.gov

Dave Jones

Assemblymember.jones@assembly.ca.gov

Bonnie Lowenthal

Assemblymember.Lowenthal@assembly.ca.gov

Pedro Nava

Assemblymember.nava@assembly.ca.gov

V. Manuel Pérez

Assemblymember.Manuel.Perez@assembly.ca.gov

Mary Salas

Assemblymember.Salas@assembly.ca.gov

Cameron Smyth

Assemblymember.Smyth@assembly.ca.gov

Audra Strickland

Assemblymember.strickland@assembly.ca.gov

 

In addition to e-mail, all of the members can be reached at the same address:

California State Assembly, State Capitol, Sacramento, CA 95814

You should note in the first sentence supporting AB 1931 that the bill is in the Assembly Health Committee  (example:  “I support AB 1931, the renewal bill for the Roman Reed Spinal Cord Injury Research Act, which will soon be heard in the Assembly Health Committee”).

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POLITICAL “DECEPTI-CONS”:  Anti-stemcell Research Bills in Michigan

By Don C. Reed

In the fantasy movie TRANSFORMERS, evil robots called Decepti-cons pretend to be useful machines like trucks or helicopters– then changing into their real destructive form.

Political “Decepti-cons”,  anti-stem cell research laws, look harmless, even useful–  but could be cruel and destructive in their impact on our lives.

In Michigan, no less than six such bills are being hurled against stem cell research.   

Quick background: in 2008, Michigan passed a state constitutional amendment called Proposal 2, which protected in law the scientific freedom to perform and benefit from stem cell research. 

One Senator, Tom George (R-Kalamazoo), was bitterly opposed.

Senator George led the opposition to embryonic stem cell research, as Chairman of the group MiCAUSE, (Michigan Citizens Against Unrestricted Science and Experimentation) funded by Right to Life Michigan and the Michigan Catholic Conference). 

His group paid for a series of highly deceptive commercials.

One ad showed fake cloning companies, implying Proposal 2 would allow human cloning—although Proposal 2 clearly stated: “Article 1, Section 27, (1) Nothing in this section shall alter Michigan ’s current prohibition on human cloning.” (emphasis added).

Another ad showed bundles of money being shoveled into a wheelbarrow, implying Proposal 2 would cost the state money—but there was no funding in the bill at all.

Still another ad showed an actor in a cow costume, implying Proposal 2 was going to create a breed of half-man, half-animal–!

Trash like this flooded the airwaves.

Fortunately, Michiganders were not fooled.

Proposal 2 became law.

Even the voters of Senator George’s own district supported Proposal 2 by a substantial margin, 59-41%.

Apparently, Senator George could not accept the will of the voters.

He is now attacking the research another way:  Senate bills  647-652—a series of anti-research bills disguised as “clarification” of Proposal 2.  

Clarification?

Michigan Governor Jennifer Granholm put it well:

“…When reminded that Right to Life says it only wants to clarify the research law, Granholm shot back, “The people who are working on life sciences don’t think that   clarification helps, and, in fact, it may hinder it.”—MIRS, February 26, 2010.

Is more regulation needed?

Stem cell research may already be the most highly regulated science in America. Rules and guidelines come from every direction, including: Internal Review Boards (IRB) from the institutions like Michigan’s colleges; guidelines from the National Institutes of Health and the National Academies of Science; specific limitations written in Michigan law in Proposal 2;  Food and Drug Agency (FDA) laws, the Health and Human Services (HHS) department rules, and more.

Far from “clarifying” the research, the new bills would bury it in a morass of micromanagement.

Does it make sense to let a known enemy of the research re-write the stem cell laws?

What does the Senator have in mind? First, he makes any violation of the complicated new rules is a felony, not a misdemeanor, even for improper book-keeping: make a mistake, go to jail. And there’s a lot more. Here are a couple:

Senator George wants to publish the name and address of every scientist involved. What purpose can this serve, except intimidation? It is not difficult to imagine ideological protestors mobbing outside researchers’ homes, shrieking in their faces when they try to go to work. This unconscionable invasion of privacy could have tragic consequences, if some unhinged fanatic turned to violence.   

Under these new laws, a doctor must certify that blastocysts used have less than a 50% chance of survival: a virtually impossible medical prediction. (This would also criminalize one of the most important goals of stem cell research: to make cellular models of chronic diseases, to study and defeat them in the Petri dish.)

Each individual microscopic blastocyst would need itemized records, written in detail—and remember, errors are felonies—with as much as a five year jail sentence.

The overall impact of these six “clarification” bills?

“Those bills would impede the development of the life sciences sector in Michigan…making it illegal to pursue mainstream forms of medical research that are widely accepted throughout the rest of the country,” Dr. (Sean) Morrison, who heads the University of Michigan’s Center for Stem Cell Biology, told the Associated Press.”—Jack Lessenberry, Toledo Blade, October 30, 2009

Why should Michigan do embryonic stem cell research?   

Two reasons leap to mind: the first is personal.

On September 10, 1994, my son Roman Reed was playing a game of college football. As defense captain, a linebacker, he went in for one more tackle. An accident occurred, and his neck was broken.  At the age of nineteen, he was paralyzed from the shoulders down.

But stem cell research offers the hope of cure. California passed a law named after him, the Roman Reed Spinal Cord Injury Research Act.

“Roman’s Law” paid for the first state-funded embryonic stem cell research in America, Dr. Hans Keirstead’s work at UC Irvine.

On March 1, 2002 , in the Roman Reed Lab, I held in my hand a rat which had been paralyzed, but which could now scamper around its exercise area. It had been given embryonic stem cells, “differentiated” to re-insulate damaged spinal nerves. That procedure will hopefully go to human trials with Geron Corporation this Summer

Christopher Reeve sent us a letter which read: “One day, Roman and I will stand up from our wheelchairs, and walk away from them forever.” Cure did not come in time for the paralyzed Superman, but our family still believes in that great dream.

Michigan Universities may help my son have a chance to walk again—him, and the million other people who are paralyzed in America—and the one hundred million citizens with “incurable” illness or injury.

The second reason? Jobs. 

Biomedicine is still in its early stages, but few would deny its huge potential, like the beginning of computers.

Michigan should be part of this building economic wave.  

It has already begun.

Since Proposal 2 guaranteed safety from political harassment, (or so it was believed, before Senator’s George’s bills) biomedical companies from around began to consider Michigan as a place to build their future.

Israel and Spain are establishing financial enterprises in the Wolverine State.

A stem cell Commercialization Center is being launched at Wayne State University Tech Town.

Gemma Diagnostics has been formed, using MSU technologies.

The World Stem Cell Summit will be held in Michigan this year—focusing international attention on the state as a good place to build.

In plain cash money, $6.8 million dollars in federal Recovery Grant funds for embryonic stem cell research has already come into Michigan. This opens the door to a whole lot more. Michigan scientists are eligible for “follow-on” grants, additional money, often much more than the original funding.

A scientist who has a small success can now apply for a larger grant from the National Institutes of Health (NIH)—new money coming into the state.

I have seen it happen.

Remember that law named after my son? 

Over 9 years, Roman’s law paid for $14 million in research—which brought in almost  $60 million from the NIH and other sources—new money for the state.

And the scientist who did the research? He has his own biomedical company now.

Even in the midst of a recession, Biomedicine has been growing: it is already the number two industry in California. In fact, we had to pass a special law (SB 471, Romero/Florez, the Stem Cell Research Education and Biomedical Training Force Development Act) to be sure we would have enough trained workers for new biomed jobs.

Michigan’s economy should not be shut out from such benefits.

Senate Bills 647-652 are trouble in disguise, like the movie villains Decepticons.

But with SB 647-652, the danger is not harmless thrills on a theater screen; the damage these laws could inflict is real, and permanent.

What needs to be done?

Senate Majority Leader Mike Bishop (R-Rochester) has it in his power to simply let these negative bills not come up. They serve no useful purpose, and may do a great deal of damage.

If you live in Michigan, (or even if you don’t) ask Senate Majority Leader Mike Bishop to take NO ACTION on Senate Bills 647-652.  You can call his office at (517) 373-2417.

Also, contact your Michigan state legislators: calling, emailing, letting them know you stand behind Proposal 2.  The opposition forces are very strong, and their voices will be heard. So must ours: the families of loved ones suffering from disease and disability.

Other key people to contact:

Michigan State Senate Officers

Pres – John D. Cherry, Jr.

President Pro Tempore – Randy Richardville

Asst. President Pro Tempore – Alan Sanborn

Associate President Pro Tempore Jim Barcia

All can be reached at: Michigan Senate, 125 Allagan St., Lansing, MI 48909
MI Tel. 517-373-2400   Fax 517-373-9635

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IMPORTANT ADDRESS CHANGE

Frustration! The Sacramento address  for letters supporting the renewal of the Roman Reed Spinal Cord Injury Research Act  (AB 1931) is not valid! I have been told by the powers that be in Sacramento to use a different address.

I apologize for the inconvenience! But please, even if you have already sent your letter, please re-send—again, I am so sorry!

 I enclose the full information below. 

Please send hard copy letters to:

Assembly Majority Leader Alberto Torrico

California State Assembly, State Capitol

Sacramento, CA 95814 

CC: diverdonreed@pacbell.net, and ryan.spencer@asm.ca.gov.

ROMAN REED SPINAL CORD INJURY RESEARCH ACT RENEWAL–???

Hi!

Would you help me with a letter?

The Roman Reed Spinal Cord Injury Research Act (named after my paralyzed son) is up for renewal this year. We have done wonderfully well. In addition to 175 published scientific papers, two patents pending, and several major scientific breakthroughs, we also brought new money to California.  Our ten-year total funding of $14 million was enhanced by an additional $60 million from out of state donations and matching grants.

But you know how tough the situation is in Sacramento!  Last renewal, we got every vote but one. This year, because of the financial thunderstorms, the votes will be very close, and could go either way.

I wish everyone in California could have been with us on opening day of the Roman Reed Lab. Christopher Reeve called to congratulate us, and my wife Gloria got so excited she photographed the telephone!

The program is beautiful; we don’t want to lose it.

Assemblyman Alberto Torrico is leading the charge: he will face the budget battles, but we must not let him fight empty-handed. He needs letters of support from Californians, and also from affected individuals and groups from everywhere—paralysis knows no boundaries.

I ask your help. Please write a short letter, and send me a copy.

Group endorsements are wonderful, but they take time. If you cannot get approval through the group’s process in time, consider a positive alternative.

If you are a member of a group, you can list your position in it, for purposes of identification: that does not commit your group.

Here is a sample letter, use all or some of it, if you like, or write your own completely.  Karen Miner, co-chair of Californians for Cures, will add some more sample letters at the end of this one.

But please write something, and do it soon, please: the voting begins mid-march. Ground mail letters must go out very soon, today if possible.

Assembly Majority Leader Alberto Torrico

California State Assembly, State Capitol

Sacramento, CA 95814 

CC: diverdonreed@pacbell.net, and ryan.spencer@asm.ca.gov.

Dear Majority Leader Torrico:

Re: support for AB 1931 (Torrico) Roman Reed Spinal Cord Injury Research Act

Dear Majority Leader Torrico:

We support AB 1931, the renewal bill for the Roman Reed Spinal Cord Injury Research Act.  

In the ten years of its existence, “Roman’s Law” has spent $14 million dollars on research to try and cure paralysis—and it brought $60 million dollars in new money for California, with another $7 million pending—both progress and profit.

Scientists helped by Roman Reed research grants have generated 175 published scientific papers, a major contribution to the field.  The Roman Reed Lab has helped new scientists get started, and assisted veterans with new approaches, from a way to re-insulate damaged nerves (which may help other neurological conditions such as spinal muscular atrophy, a disease which kills children, often before the age of two) to a new variation of the Petri dish, unchanged for decades, updating to cheaply sort cells. Rats which could only drag themselves, are scampering now, thanks to this research. It must go forward.

Paralysis affects roughly 464,000 Californians, at a cost of about $1.5 billion dollars a year. The suffering endured by paralyzed people and their families cannot be counted.

This bill is small, (just $1.5 million a year, ironically, that figure is one one-thousandth the cost of the problem) but mighty: it helps California, and the world; it deserves unanimous support.

We stand with Roman Reed, who said: “Take a stand for research for cure—take a stand, so one day, everybody can.”

Thank you,

Your name

If you want to put more—or just a single sentence of support, that’s fine.

 If your group can send a support letter, that’s wonderful!

But any help is better than no help. We need lots of letters

Feel free to contact me if you need help with the letter language.

Best,

Don 

(Below is a press release from Majority Leader Torrico, and AB 1931 information.)  

FOR IMMEDIATE RELEASE CONTACT: Jeff Barbosa

February 17, 2010 916-319-2723

TORRICO BILL WILL EXTEND FUNDING

FOR INNOVATIVE SPINAL CORD INJURY RESEARCH

Named after a Chabot College football player injured during a game, the Roman Reed Program supports scientific research in neural regeneration.

Sacramento – Assembly Majority Leader Alberto Torrico (D-Fremont) introduced legislation to extend funding for research into spinal cord injuries. Funding for the Roman Reed Spinal Cord Injury Research Act is due to expire next January.

Torrico’s AB 1931 will extend funding for an additional five years.

“About 646,000 Californians live with paralysis from various neurological conditions and the Roman Reed program funds critical research throughout the state that could improve their quality of life and their ability to achieve everyday tasks,” Torrico said. “Leveraging the $13.9 million in state funds allocated so far, researchers have brought in about $60 million in additional grants from the National Institutes of Health and other sources to enhance our knowledge and understanding of spinal cord injuries. 

The program is named after Roman Reed, a former Chabot College football player who suffered crushed vertebrae during a game. Reed became an advocate for spinal cord injury research and in 2000 the Roman Reed Spinal Cord Injury Research Act was signed into law and later renewed in 2005.

The research funds are allocated to the University of California and administered by the Reeve-Irvine Research Center at the University of California, Irvine. To date, more than 300 Californians have participated in 120 research projects. Each year, scientists in the spinal cord injury research arena gather at a “Meet the Scientists” forum sponsored by the program to discuss the best methods to collaborate on creative spinal cord research.

“By extending the funding for an additional five years, the bill will help continue what California began in 2000,” Reed said. “This research will make an enormous contribution to those of us suffering from spinal cord injury paralysis.”

Research partially funded by the program, conducted by the University of California, San Francisco, University of California, San Diego and UCLA, among others, has studied how the nervous system can use new pathways to issue commands to move; how drugs that block the body’s immune response to the initial trauma could increase the chance of recovery from spinal cord injuries; and when some of the research could find its way to human clinical trials.

###

The Roman Reed Spinal Cord Injury  Research Act

AB750/AB1794 – Dedicated to finding  treatments for spinal cord injury

and paralalysis through research

Since its inception nine years ago,the Roman Reed Program

has spent a total of $13.9 million on research.

This unique program has attracted $59,969,394 million in additional grants from the National Institutes of Health and other sources: New money for California.

The Roman Reed Program is administered by the Reeve-Irvine Research Center at the University of California at Irvine.

Roman Reed Spinal Cord Injury Program Fact Sheet

Problem

California is home to approximately 646,000 people living with paralysis from various neurologic conditions.[1]  Nationwide, someone suffers a traumatic spinal cord injury every 41 minutes (based on an estimated annual incidence of 40 new injuries per million population[2]) leading to a significant loss of earning potential and high medical costs associated with their disability.  Furthermore, a recent national study estimates that 1.3 million Americans live with paralysis due to spinal cord injuries1, which is close to 5 times higher than previously reported statistics.  Given this increasing number of paralyzed people, rising health care costs with caregiver needs and loss of income potential, the total cost to the State of California approaches $ 1.5 billion per year.  Promising research-driven therapies could greatly improve the quality of life and functional capacity of SCI individuals, thereby lessening this tremendous financial burden to the State.

History:

The Roman Reed Bill was signed in September 2000, and was renewed in 2005, through AB1794, which was signed by Governor Schwarzenegger in September 2004.  Over its 9-year history, the fund has provided approximately $1.5 million per year for spinal cord injury research in the State of California. The Roman Reed Research funds are allocated to the University of California (UC), and the UC Office of the President allocates the Reeve-Irvine Research Center at the UC, Irvine to administer the funds.

Roman Reed Program

A portion of the Roman Reed funds support the Roman Reed Core Laboratory, allowing for the rapid translation of ideas into research, by making it possible for any scientist with a novel idea to immediately undertake experiments in well-developed animal models. The second portion is used to launch unique, creative, research projects by scientists throughout the state of California. The program provides seed funds for highly innovative projects that are stepping stones for new federal and other funding.

Roman Reed Research Awards:

Between 2000 and 2009 over 300 Californians have participated in 120 Roman Reed Research projects.  During that time, 64 graduate students have been supported as Roman Reed Fellows. 

Public Outreach:

Over 1000 people have participated in Roman Reed sponsored public events over the past 9 years.  The goal of the annual “Meet the Scientists” Forum is to bring the spinal cord injured community into the research arena.

Leverage:

The total amount of Roman Reed funding from the program’s beginning in 2000 through 2009 is $13,880,100.  These funds have been leveraged into $59,969,394 in new funds being brought into the state through federal and other grant sources; an additional $7,351,391 is pending.


[1] Christopher and Dana Reeve Foundation, 2009

[2] National Spinal Cord Injury Statistical Center, 2009

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THE CALIFORNIA STEM CELL PROGRAM: It Works, Why Mess With It?

By Don C. Reed

 Having brought in roughly one billion dollars in new money for the state, (more on that later) the California stem cell program is already a spectacular success.

But there are other and more personal ways to judge the California Institute for Regenerative Medicine (CIRM).

In 1966, my sister Patty Reed found out she had leukemia, and there was no hope. She told her boyfriend Nye Morton they should break up: her passing would be hard, and she did not want him to see her in pain. To Nye’s everlasting credit, he said no, he felt just the opposite: if they only had a little time left, they should get married, and spend it every minute they had together. They did get married; and Patty was such a beautiful bride.

Eleven months later, she was taken from us at the age of twenty-three.

Just a few years ago, a scientist named Catriona Jamieson of UC San Diego, was working on blood cancer stem cells, something called myeloproliferative disorders—which can lead to leukemia.

Politics got in her way. Dr. Jamieson needed a grant from CIRM—but the funding for California’s new stem cell program had been delayed by lawsuits.  

Fortunately, Governor Arnold Schwarzenegger was in office. It would have been easy for him to just sit by, take a wait and see attitude. Instead, with foresight and courage, he took a stand for stem cell research, authorizing an advance (since paid back) of

 $150 million against the initiative’s bond authority.   

Catriona Jamieson’s research went ahead.

And today? Defying the usual slow pace of science, which often takes decades or centuries to solve problems, her CIRM-funded project has succeeded in preliminary human trials.  

There is a long way to go, but leukemia is being chased down, and fought.

People like Patty Reed and Catriona Jamieson are why seven million California voters said yes to Proposition 71.

Unfortunately, another political obstacle has arisen.

Senate Bill 1064.

Carried by Senator Elaine Alquist, (D-San Jose) SB 1064 would rewrite the California stem cell program.

Her press release announcing SB 1064 began with a statement of support for the overwhelmingly popular state program:

“I was an early supporter of California’s groundbreaking stem cell initiative, and know that our public investment on behalf of the State of California will lead to new frontiers of treatment to heal people with chronic diseases”, said Alquist.

So far, so good.

 But then it came: she threw down her claim of justification: for a law which might delay or obstruct the medical advances California wants.      

“… CIRM is essentially accountable to no one….(emphasis added) By accepting public bond dollars, CIRM also accepted public accountability, public transparency, and a public return on their investment.”  

http://dist13.casen.govoffice.com/

Accountable to no one?

“CIM has been audited by the Bureau of State Audits…(was) found to have met all accountability standards by the State Controller…(and) has had five years of clean financial audits by independent public accounting firms.”—18 February 2010

http://www.scribd.com/doc/27096989/Klein-Torres-Roth-Letter-Regarding-CIRM-Legislation

Add in the continuing oversight of the Governing Board, (the Independent Citizens Oversight Committee, or ICOC), the new external review just beginning, other independent studies, not to mention the massive documentation required by the two year lawsuit,  and it becomes clear that CIRM has been audited so many times, it is difficult to keep track of it all. There are literally auditors auditing the work of the other auditors. Adding more would be like installing seventeen anti-virus programs into your computer, so many the computer gets confused and distracted and cannot do its job.

“…public transparency”?

By law, the California stem cell program makes all its decisions in public.  Everyone is welcome, and may participate. (go to www.cirm.ca.gov, and click on “meetings”.)  About the only thing the CIRM insists on keeping private is the names of people and companies whose applications for grants are rejected. Why is this done? To protect their reputations. Publishing those whose projects fail to gain funding may damage their chances somewhere else.

And as for “public return”?

For starters, how many government programs bring in new money?

CIRM’s construction budget was $270 million. However:  the leadership negotiated with every institution wanting a grant. If a company or a college wanted California dollars to help build a stem cell laboratory, they had to compete for the opportunity by bringing other money to the table, which they did–  an additional $885 million—every dime of which is being spent in California.

Who got that extra money for California?

The Chair of the Governing Board, Bob Klein, and the 28 other patient advocates, scientists, and doctors who oversee the program.

Under the terms of SB 1064, those negotiations would not have been allowed.

The new law would shift all such duties to one person, the President of CIRM, who would also be responsible for enforcing those policies.  

SB 1064 would re-write the job descriptions of the President of CIRM and the Chair of the Governing Board, overburdening one and making a figurehead of the other. Their terms would be reduced to only four years, overlapping—so they would only have two years in which to work together, discouraging teamwork.

This is not what we asked for.

Seven million Californians voted for a carefully developed structure; the Governing Board and the Chairperson are to set policy and negotiate contracts: the CIRM President and staff propose the scientific vision and implement that vision under the oversight of the board.   

This division of labor is clear, simple, straightforward; it works.  

SB 1064 offers a long list of changes.

Let’s look at two:

SB 1064 would require the Citizens Financial Accountability Oversight Committee, a political board, to do performance audits on the science.

Does that make sense, for politicians to evaluate the scientific goals and progress of the stem cell program?

Regenerative research science is complicated. That is why California law insists that every CIRM grant proposal be judged twice: first by scientists from out of state (to prevent conflicts of interest) on the Grants Review Board with its patient advocates, and then by the Governing Board in public meetings.

Should we trade that careful structure, for the guidance of non-experts?

Perhaps most damagingly, SB 1064 would impose a complicated system of price controls and licensing requirements, for products resulting (in whole or in part) from CIRM-funded research– and demand that all revenues go into the General Fund.

There is a world of hurt in that sentence.

The goals are good: to provide access to therapy for everyone, and to give money to the California government.

But the method is flawed. If SB 1064 goes forward, both goals—access and revenues—are threatened.

One fact is crystal clear. We need the corporations to develop the products that will heal sick people. Without the involvement of private enterprise, neither therapies nor products will be developed.  No patients will be helped; no new revenues will flow into the public coffers, and the greatest research in the world will be nothing more than empty talk.

To develop and test new medical therapies and products requires an investment of potentially hundreds of millions of dollars.

Is a company likely to accept such risk, if it is not assured of ownership of the product?

The Governing Board has been working on these issues since the beginning, and have come up with decent and caring approaches: ways to answer the need for financial return to the state without crushing out the progress of the research.

 In addition to a graduated system of payments from companies that develop products, CIRM has also established a policy for access to new drugs, including provisions for public programs getting these drugs cheap.

As always, these policies resulted from state-wide conferences, public input, and consultations from every interested source.

“CIRM has already adopted extensive regulations to balance the opportunity for Californians to benefit from their investment in stem cell research while ensuring that the research is not impeded. These regulations include revenue sharing, access plans, and pricing preferences for public entities. (The) governing board adopted the regulation after extensive public hearings, a process that John Simpson of Consumer Watchdog has referred to as a model for making policy.”—ibid.

One question occurs to me, and it comes back to my family.  

Before the leukemia struck, Patty was studying computers. She used to carry around stiff pieces of paper with holes punched in them, and she tried to explain to me about binary codes and things I did not understand—and that electronics was the wave of the future.

Of course, she was right. We all know what happened next. The computer revolutionized our lives, and San Jose, Senator’s Alquist’s home district, became Silicon Valley.

Think how many jobs were brought to San Jose, how many companies were founded, how many families were fed, how many tax dollars were generated.

Would that unparalleled success have happened– if the fledgling new enterprise had been inundated by complicated new tax laws and hyper-regulations?

In all the world, California’s carefully-structured stem cell program is unique. It exists to ease suffering, and save lives, through regenerative medicine. It should be allowed to fulfill the will of the voters, and to do its useful work, living by its motto:

“Turning stem cells into cures”.

 That motto, by the way, was chosen in a public meeting. It was written by my paralyzed son, Roman Reed.

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