"People must fight for each other", said the lady in the elevator.
She and I had on a twelve-story elevator ride together, and I had just been telling her about my paralyzed son Roman Reed, and our decade-long fight to help California scientists cure paralysis.
We parted at the second floor, but her words stayed with me...
We were in Sacramento, near California's glorious Capitol Building. I was getting ready for the Appropriations Committee hearing on AB 1657 (Wieckowski, D-Fremont), a one-dollar traffic ticket add-on, to fund the Roman Reed Spinal Cord Injury Research Act.
Appropriations... the committee where our bill died last year.
Once more we had gathered support, asking letters from families of paralyzed people, and once more, everything came down to one man, one decision.
Chairman Felipe Fuentes (D-Sylmar) was termed out; this was his last year as an Assemblyman. I believe he will run for Los Angeles City Council next, a tremendous responsibility; he is a young man, a fine speaker with a long career ahead of him.
But today his committee held our future in his hands. If they said no, (and most committees followed their chair's recommendation) it would remove funding from California paralysis cure research -- and reduce my son's chances to recover from the crippling disorder.
"Mr. Wieckowski?" said the Chairman, inviting our Assemblyman to make his presentation on behalf of our bill. Bob made sure to mention the $64 million dollars in new money "Roman's law" had attracted to the state: matching grants from the National Institutes of Health and other sources, 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.
Our friend Karen Miner spoke very softly.
"I have been paralyzed twenty years, and I ask you to approve this bill to fund the Roman Reed Spinal Cord Injury Research Act."
Small but mighty, our law's breakthroughs ranged from practical to amazing:
- 175 published papers, a small library of what worked and what didn't, pieces of the puzzle;
- The world's first embryonic stem cell human trials had been begun by Geron, Inc.; three paralyzed people had the cells with no ill effects -- Geron ran out of money to continue the trials, but the research we had funded first 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 co-developed with NASA could lower the costs of rehabilitation;
- An electronic "bridge" could join the halves of a completely 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 electronic "suit" allowed a paralyzed person to actually walk;
- A new way made it possible for nerves to reconnect -- through the injury scar.
But the best research in the world would stop, if there was no funding for it.
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 had asked this same committee for a $3 traffic ticket add-on to continue the vital research.
Unfortunately, Chairman Fuentes had said no.
The main objection last year was the funding mechanism, a $3 surcharge on traffic tickets. The problem was clear. If a poor person gets a traffic ticket, and can't afford to pay it, he or she may go to jail.
But could we allow the gigantic problem of paralysis to be ignored? We offered a reasonable compromise, lowering our funding request to just $1.00, the lowest increase allowed by law. I even suggested asking only fifty cents -- pennies for paralysis -- but was told that was not allowable.
Eight states did something similar: 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 funded spinal cord injury research with traffic ticket fines, some as high as $100. Our bill asked only one dollar, less than the price of a cup of coffee, and violators could avoid it altogether just by driving safe.
Why focus on spinal cord injury? Two reasons. One, other injuries from car crashes can heal -- spinal cord injuries do not heal. Paralysis is forever, 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.
I finished with a quote from Winston Churchill. In the depths of World War II, when Nazis were raining bombs on London, Churchill asked for funds to fight, saying:
"Give us the tools, and we will get the job done."
It was quiet in the room. I had had my chance.
And Chairman Felipe Fuentes turned to Bob Wieckowski and said: "We want to work with you on this bill."
In two weeks, the answer will come. Thumbs up, or thumbs down.
If you want to help... send letters and emails to:
- Jeff.Barbosa@asm.ca.gov -- Legislative Director for Bob Wieckowski.
- Hard copy letters to: Assemblymember Bob Wieckowski, State Capitol, P.O. Box 942849, Sacramento, CA 94249-0020
After all, as the lady in the elevator said: "People must fight for each other."
Follow Don C. Reed on Twitter: www.twitter.com/diverdonreed