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Don C. Reed

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Little Grants, Big Progress? Paralysis Cure Research Bill Moves Ahead

Posted: 07/08/2013 12:06 pm

The hallway was jammed outside Room 4203 in the Sacramento Capitol Building. Waves of body heat reached near asphyxiating levels.

A large-voiced woman with the bearing of an Army sergeant major called for quiet, then announced the Senate Committee hearing was running late, and we should consider going to the coffee shop for some refreshment.

About half the folks took her advice. It was nice to be able to see the floor again.

But three of us were not going anywhere: Roman Reed, the inspiration for the program to be funded by Assembly Bill 714 (Wieckowski, D-Fremont); Aradna Verba, a young student scientist who was last year's President of the Student Society for Stem Cell Research; and myself.

Already some worries: Roman's van was not altogether reliable in the 107-degree heat, and the door mechanism sometimes glitched, having to be opened from the outside. But Roman had his cell phone, and would call me if the door jammed.

But Roman arrived safely, and we settled in for the waiting.

Aradna works with neural stem cells at Cal Berkeley, under the guidance of Dr. David Schaffer, director of the Berkeley Stem Cell Center. She was very excited about the stem cell possibilities for alleviating Alzheimer's disease, the tragedy of memory loss. She would be testifying today.

The biggest single ingredient in politics? Waiting. Do the work, make the visits, harass your friends for one more letter, fax or phone call, and then -- come to the Capitol and wait.

At last a surge in the mob population; it was three o'clock. The doors to the big conference room, 4203 opened -- we went in -- and the air-conditioning was working. Blissful coolness washed over us, bringing an audible sigh, like stepping barefoot into a chill mountain stream.

And then, of course, we waited some more.

We were told beforehand that if there was strong support on both sides, the chair, Assemblyman Ed Hernandez, would say something to that effect -- meaning keep the speeches really short -- just name and organization, statement of support.

But he did not say that. Which meant, I thought, that we maybe had a fight on our hands.

Our bill's author, Bob Wieckowski, D-Fremont, had to catch a train at 3:00. Fortunately he had planned ahead for that contingency and his friend Senator Roger Dickinson delivered the presentation -- and very eloquently, too.

Roman spoke first highlighting the emotional cost of not curing paralysis.

And Aradna brought up the age factor for scientists -- right now, the average age for a scientist to receive their first NIH grant is 44 -- but with success on a small grant from the program we supported, the big grants could come sooner.

Which is better: to say, for a grant-seeking scientist to say, "This is what I have done", or, "This is what I would like to do." Accomplishments matter.

I mentioned the one million dollar cost of the whole program was approximately equal to the care for just one paralyzed person in the first year of their paralysis -- and that our program had strong bi-partisan support, passing the Assembly on a 68-3 margin.

But wait, there was a question: what was the stem cell situation?

Roman and I spoke at once, explaining that while the program definitely had the capability to use stem cells, there was a far larger stem cell program (the California Institute for Regenerative Medicine, or CIRM) for scientists to approach. In our entire history, we had funded exactly 4 (of 129) experiments with the cells in question. Primarily, we focus on the "everything else" -- from pressure sores to blood pressure irregularity to rehab and much more.

Was it a good enough response? We could only wait and see: there was nothing more we could do to influence the situation. The vote was called.

Here are the Senators who voted yes, in favor of paralysis cure research:

Ed Hernandez.

Joel Anderson

Jim Beall

Kevin DeLeon

Mark DeSaulnier

Bill Monning

Jim Nielsen

Fran Pavley

Louis Wolk

And here are the people who voted NO:

AB 714, to restore one million dollars to the Roman Reed Spinal Cord Research Act, had passed the Senate Health Committee, 9-0, backed by Republicans and Democrats alike.

The next fight ahead? The dreaded Appropriations Committee.

 

Follow Don C. Reed on Twitter: www.twitter.com/diverdonreed

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