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"People must fight for each other," said the lady in the elevator.

“FIGHT FOR EACH OTHER”:  Paralysis Cure Research Hangs in the Balance

By Don C. Reed

“People must fight for each other”, said the lady in the elevator. She and I were on a twelve-story elevator ride together, and I had just been telling her about the fight to cure paralysis.

We parted at the second floor, but her words stayed with me.

It was one o’clock in the morning, in Sacramento, just a couple blocks away from California’s glorious Capitol Building. I was on my way to the Sheraton Hotel’s business office, to work on my speech some more, getting ready for the Appropriations Committee hearing on AB 1657 (Wieckowski, D-Fremont), a one-dollar traffic ticket surcharge, to fund the Roman Reed Spinal Cord Injury Research Act.    

Appropriations… where our bill had died last year.

Fortunately, we were not alone. Friends were fighting right along with us. These were people who had already done so much for so many-- we should be embarrassed to ask them for more—but Roman and I never hesitate to ask the busiest people for one more favor, and it is amazing how many will still say yes.

Our bill was supported by people like:

Lieutenant Governor Gavin Newsom, whom I believe will be President of the United States one day;

Steve Westly, former California State Controller;

Sherry Lansing, former President of Paramount Motion Pictures, CIRM board member and cancer advocate;

 former Senator John Burton, who helped Roman’s law be born;

Hans Keirstead, Chairman, CA Stem Cells, Inc., Professor of Neurobiology, UC Irvine;  

Leeza Gibbons, ALS advocate like no other, and former hostess of Entertainment Tonight;

Duane Roth, CIRM board member and biotech leader;

former Senator Art Torres, who worked with Cesar Chavez and has since fought with all his considerable might to advance stem cell research;

Paul Knoepfler, Associate Professor, Cell Biology and Human Anatomy, UC Davis School of Medicine, and the world’s only blogging stem cell scientist;

Bob Klein, our greatest champion, who began and led Proposition 71;

Eythor Bender, CEO, Berkeley Bionics;

Kristi Yamaguchi, American Figure Skater, Founder, Always Dream Foundation;

Jeanne F. Loring, Director of the Center for Regenerative Medicine at the Scripps Research Institute;

Ann Tsukamoto, Senior Vice President, Stem Cells Inc.;  

Chris Airriess, Senior Vice President, CA Stem Cells, Inc.;

Andrew Gumpert, President, Worldwide Business Affairs and Operations at Columbia Pictures;

Brock Reeve, Executive Director of Harvard Stem Cell Institute and Christopher Reeve’s brother;

Michael S. Beattie, Ph.D., Professor, Neurological Surgery, Director of Research, UCSF;

Stuart M. Gordon, Partner, Gordon & Rees, LLP;

Craig Newmark, Founder, Craigslist.org;  

Zach Hall, former Director of the National Institute of Neurological Disorders and Stroke;

Mary Vassar, Executive Director, UCSF, San Francisco General Hospital Brain and Spinal Injury Center;

Ben Barres, Chair of Neurobiology at Stanford University;

with crucial support from legislative champions like Assemblymembers Nancy Skinner, Gil Cedillo, Bill Monning, Tom Ammiano, Mike Eng, Richard Gordon, Mary Hayashi, Roger Hernandez, Holly Mitchell, Dr. Richard Pan, V. Manuel Perez, Das Williams, Jerry Hill, Mike Gatto, Mike Davis, Steven Bradford—and many more, letters and emails pouring in from all over the world.

Roman and I had met with legislative aides of every member of the Appropriations Committee at least once, and it was amazing how patient these people are, from either party. (There are roughly two thousand bills under consideration in Sacramento right now, so they must live in a near-constant state of overwhelmed, like people surfing tsunamis.)

Again, we had help. Behind the scenes, in Bob Wieckowski’s office, Chief of Staff Tricia Tahmasbi and Legislative Director Jeff Barbosa worked long and hard to give our bill its chance. And of course none of this would have happened at all, without our legislative champion Bob Wieckowski, who cheerfully took up the torch from Alberto Torrico and our original leader, John Dutra.

Morning…

Roman, Karen Miner, Angela Gilliard of the UC system, and I were sitting in the audience of Room 4202, where the appropriations committee held sway.

Chairman Felipe Fuentes was termed out; this was his last year as an Assemblyman. I believe he will be running for Los Angeles City Council next, a tremendous responsibility; a very young man, a fine speaker with a long career ahead, and I wished him well.  

But this day he held our future in his hands. If his committee said no, (and most committees side with their chair) that decision would delay California paralysis cure research—and push back my son’s recovery.

Sitting beside him was Geoff Long, a quietly powerful individual whose impact is perhaps little known, but deeply felt: the Appropriations Committee Analyst. We exchanged polite nods, having known each other several years. Geoff is a straight shooter. It is his job to be financially objective, even when it hurts, and that is not easy. I had met with him a few days ago. We talked for half an hour, and regardless what happened today, I would still cross the street to shake hands and say hello.

But I feared his words. It was he who wrote the strongest argument against our bill—based on the undeniable fact that (with Sacramento unable to raise taxes on the well-to-do) traffic tickets are too expensive for some to pay. If a person has no money, and cannot pay a fine, they may go to jail, which means suffering for them, and a loss to the government.

“Mr. Wieckowski?” said Chairman Fuentes, inviting our leader to make his presentation on behalf of our bill. Bob did, being sure to mention the $64 million dollars in new money our law had attracted to the state:  a 4-1 return on our $14 million investment.

Roman spoke with his usual warmth and eloquence. As always, I had provided him with suggested language, and as usual, he read the printed page, considered it, and set it aside. He always spoke straight from the heart, eye to eye with each committee member.

Karen spoke just a couple of sentences, very soft.

“I am Karen Miner, I have been paralyzed twenty years, and I ask you to approve this bill to fund the Roman Reed Spinal Cord Injury Research Act.”

The words “paralyzed twenty years” seemed to echo in the room. Karen has been working side by side with us on paralysis cure battles for just about that long.

Representing the University of California system, Angela Gilliard reminded the committee of what would be lost, if the funding was not approved. The program is administered by the UC System, thanks to the suggestion of Republican Assemblyman Sam Aanestadt (R-Grass Valley, ret.).

I wished we had two hours to talk, instead of two minutes.

So much had been accomplished… Our breakthroughs ranged from practical to amazing.
•    175 published papers, a small library of what worked and what didn’t, pieces of the puzzle which all scientists could try to put together;
•    The world’s first embryonic stem cell therapy human trials had been begun by Geron, Inc.; in a safety trial, three paralyzed people had the cells with no ill effects—Geron ran out of money to continue the trials, but the research was solid;
•    Two patents were pending, including a revolutionary change to the Petri dish itself, so it could sort cells, and save money;
•    Robotic devices we helped develop could lower the costs of rehabilitation;
•    An electronic “bridge” could join the halves of a severed spine;
•    A new biomed company California Stem Cells, Inc., was formed from research our small law funded first.
•    Our scientists developed more accurate ways to measure paralysis (and recovery);
•    A strange-looking “suit” allowed a paralyzed person to actually walk;
•    A humane way to measure paralysis in a primate, by “freezing” just one knuckle;
•    A new way for nerves to reconnect—right through the spinal injury scar.
But all this progress stopped, if there was no way to fund it.

I felt the heat rising in my veins, my breath trembled in my chest. Logically, I knew there were no villains in the room, just honorable people trying to make sense of an impossible situation. But the emotion I felt was that I had to defend my son.
I read directly from my hand-written notes…

I am Don Reed, citizen-sponsor of the Roman Reed Spinal Cord Injury Research Act and Roman Reed’s father. Our small law has always had bi-partisan support; we were twice renewed by near-unanimous approval of assembly and senate. (Only one person voted against the program in ten years!)

The Act was originally paid for by the general fund, $1.5 million a year. Budget cuts removed that, forcing us to seek a new source of funding. We did. Last year we asked this committee for a $3 traffic ticket add-on to continue the vital research.

Unfortunately, the answer was no. So, we studied your concerns, adapted our proposal and hope we have provided a reasonable compromise.

The main objection was the $3 surcharge on traffic tickets. We recognize the problem of large fines.  But we are a tiny fragment of that, and cannot allow the gigantic problem of paralysis to be ignored. We offer a compromise—not $3, not $2, but just $1—the lowest increase allowed by law. I even suggested asking only fifty cents—pennies for paralysis—but was told that was not allowable.

We follow precedent set by eight states—Florida, Illinois, Kentucky, Missouri, New Jersey, New York, South Carolina and most recently Alabama, where a bill patterned after Roman’s law just passed that state’s Senate. All these states fund spinal cord injury research with traffic ticket fines, some as high as $100—our bill asks only one dollar— it would mean little to violators, and they could avoid it altogether just by driving safe.

Why focus on spinal cord injury? Two reasons. One, other injuries from car crush can heal—spinal cord injuries do not heal. They are permanent, until you die.
Second, spinal cord injury research applies to many other conditions—Lou Gehrig’s disease, Alzheimer’s, Parkinson’s, traumatic brain injury, muscular dystrophy, stroke, spinal muscular atrophy which can kill a child before the age of two—and more.

The spine affects everything the body does, asleep or awake. From regulating blood pressure to going to the bathroom to interpreting sensations on the skin: every paralysis is different: some have total numbness, so the body feels like a black hole from the shoulders down—my son has a terrible scar on his knee where it touched against a barbecue, and he did not know the flesh was burning till someone saw the smoke—to hyper-sensitivity, when a feather touch on the skin can bring a scream.

The first mention of paralysis was on the walls of an Egyptian tomb. “Of paralyzed soldiers”, it said, “Deny them water, let them die, there is nothing that can be done.” Today, there is something you can do.

AB 1657 is your legislative legacy. You will remember it, and its benefits will continue, long after your time of public service is done. For me personally, I am 66. If I make it to my father’s age—he is 91—I believe I will see my son fulfill his dream to walk down the beach, holding his children by the hand, and he will not walk alone. Others will benefit—but only if we can pay for the research.

In the depths of World War II, Winston Churchill asked for more defense funds, and was told that his country could afford no more. And Winston Churchill said:
“Give us the tools, and we will get the job done.”

That is what I ask you today, give us the tools and we will get the job done.
Support AB 1657, and consider becoming a co-sponsor…

I looked at the Chairman, nodded my head. It was all I had.  

And Felipe Fuentes turned to our Assemblyman Bob Wieckowski and said:
“We want to work with you on this bill.”

Now, we wait. In two weeks, the answer will come. Thumbs up, or thumbs down.

Stay tuned.

And if you want to help… we still need letters and emails to Chairman Fuentes, and our legislative leader’s office.

felipe.fuentes@assembly.ca.gov  --Chairman Fuentes

Jeff.Barbosa@asm.ca.gov –Legislative Director for Bob Wieckowski.

Hard copy letters (wonderful, if you have the time) please send to: Assemblymember Bob Wieckowski, State Capitol, P.O. Box 942849, Sacramento, CA 94249-0020

We will need them not only for this committee, but the others beyond, as well as the full vote of the members of the Assembly and Senate.

What do you say? Shall we do some miracles together?

After all, people must fight for each other.

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