Sometimes the words of a child can be so direct and honest, that it shakes your world...
PARALYSIS CURE BILL ADVANCES, DANGER AHEAD
By Don C. Reed
When Roman Reed Jr. was two years old, he asked his paralyzed father:
“When do I grow up—and get my wheelchair?”
For him, the question made perfect sense. He admired his Dad; if he had a wheelchair, it must be a good thing.
Roman Reed senior, my son, was paralyzed in a college football game 17 years ago. He has three children: Roman Jr., now 13, Jason 7, and Kate who just turned 3. None of them have ever seen their father walk. But they see his courage every day. They knew he would never quit trying to find a cure for paralysis.
Tuesday afternoon in Sacramento, a new bill was offered, which could go a long way toward making wheelchairs for temporary occupancy only.
It was the Assembly Health Committee hearing…
Assembly Bill 1657, (Wieckowski, D-Fremont) would add one dollar to every traffic ticket—funding for the Roman Reed Spinal Cord Injury Research Act.
At 1:30 in the afternoon, Roman and I sat in Hearing Room 4202, waiting for our turn to try and convince the committee.
Waiting and waiting, hour after hour. We listened to a variety of tough, hard-to-understand bills, and tried to get a handle on the various personalities.
Some spoke seldom, some talked a lot. One (Assemblymember Holly Mitchell) impressed me so much with her caring and intelligence that I went up to her on the sidelines and blurted out that I admired her work. Soon as I said it, I felt foolish, of course, but oh well. An honest compliment should be given quickly, before the emotion fades.
As in all law-making, most of the work was invisible. With hundreds of bills to keep track of, legislators have no choice but to rely on their staff, and those were the people Roman and I spent the most time visiting. If the member was there, great, but we always made sure every piece of material got into the hands of the appropriate aide.
We had a cheerful leader in Assemblymember Bob Weickowski (D-Fremont), always a smile, always ready to help a constituent.
But the most important person in the room?
The Chairman of the committee was a man of honor, Assemblymember Bill Monning. I had heard this before, and would see it today. You can also tell a lot about a politician from the people who work with him.
When I met with his chief committee consultant, Tanya Robinson-Taylor, she was plainly under the gun for time pressure; there was a line waiting to see her. But I had emailed beforehand, she said come ahead, which I did-- and she made twenty minutes happen somehow.
The Chair had three concerns about our bill.
Objection 1: Many injuries are caused by car crash--why should spinal cord injury be singled out for traffic ticket research money?
Answer: First, most injuries from car crash will heal. Over time, the body will repair itself. But spinal cord injuries never do. SCI is the most devastating insult the body can sustain and yet live—and it is forever.
Objection Two: Why just this one neurological condition?
Answer: Spinal cord injury research may benefit many other conditions. Neurological disorders are a piece of the puzzle. But spinal cord injury is the puzzle. Because the spine connects all portions of the brain and body, damage to it affects not only the entire central nervous system, but also many parts of the non-neurological parts of the body-- the ability to breathe, bloodflow regulation, bowel and bladder control, much more.
Importantly, any step forward for spinal cord injury opens the door to cure for all nerve disorders—multiple sclerosis, muscular dystrophy, Lou Gehrig’s disease, traumatic brain injury, and much more.
For example, there are almost 1.3 million Americans with spinal cord injury—but far more-- 5.6 million—when you add in paralyzed Americans from all sources. No matter how a person becomes paralyzed, spinal cord injury research is where the cure must be found.
Objection Three: the traffic ticket add-on may be unfair and/or overused.
Answer: We understood that concern and adapted our bill to address it, cutting our funding proposal by 2/3. Last year we asked for three dollars per traffic ticket—this year we asked the smallest increase allowed by law: just one dollar. I had asked for even less, just fifty cents, but a dollar was the cheapest that could be done.
In a perfect world, the General Fund should provide such funds, as it did in the beginning of our Act. The original bill was to have been a $19 million annual grant from the general fund—but the Energy Crisis shot that down. We came back, tried again, finally achieved $1.5 million a year. Although our program was twice renewed by unanimous consent of the Assembly and Senate, there was no money for it. So we either found a new source of funding—or watch the program die.
We offered a reasonable compromise. It followed a precedent set by no less than eight other states—Florida, Illinois, Kentucky, Missouri, New Jersey, New York, South Carolina and Alabama—all funded spinal cord research with traffic penalties. Some fines earmarked for paralysis research went as high as $100—and we were only asking for just one ($1) dollar.
The program cannot be faulted for scientific validity. Visit (http://www.reeve.uci.edu/... and download our 58-page report, see fully what we have done.
Before the California stem cell program was developed, Roman’s law funded stem cell research, including the ground-breaking embryonic stem cell work which led to the world’s first human trials. Geron ran short of money and had to stop, but the therapy was already proven safe in the trials to date. Efficacy? In 2002, I held in my hand a laboratory rat which had been paralyzed—sad videos of the rat called Fighter dragging her hindquarters like luggage—but after the stem cells, she raced tail-high across the play area.
Today that same research is being explored as a possible therapy for Spinal Musculr Atrophy (SMA), that dread killer of children.
But with California’s great stem cell program in action, the RR Act did not need to duplicate the larger organization’s work.
We did the “everything else” that needed to be done: working on the dozens of problems connected with paralysis. A pressure sore on the rear can literally keep a paralyzed person in bed for six months, lying on their stomach—or the “decubitus” can rot away the flesh down to the bone. Dysreflexia, a paralysis-related blood pressure disorder can be fatal—how do we fix that?
We have already published 175 scientific papers, each telling us something that works, or doesn’t.
Two patents are pending on inventions our research developed—one a new way to sort cells, redesigning the petri dish, unchanged for a hundred years. Instead of a machine so big you have to rent it, a new petri dish could sort the cells by their electric potential, saving thousands of dollars.
And rehabilitation? Most paralyzed people cannot afford the life-long rehab their bodies need—it requires too many therapists. But with a robotic device developed in tandem with NASA, costs may come way down.
Financially? A spectacular success.
What other program brings in more money than was invested? “Roman’s Law” has spent roughly $14 million of taxpayer dollars in its history—and attracted more than $64 million in matching grants from the National Institutes of Health and other sources—new money for the state.
One by one the other bills came, and I was reminded again what an honorable thing politics can be. One proposal Chair Monning plainly disagreed with, but he did not use his powers to shut off debate. Instead he spent at least an hour going back and forth, allowing all sides to be heard to the fullest.
And then at last, it was our turn. Roman surged his power chair up, I followed in his wake. Angela Gilliard, representing the University of California system, spoke in support, as did we.
But the last bill had taken so long, when it was through the members scattered. There was no longer a quorum. Not enough people to vote.
We went outside, and waited some more, until at last the final votes were tallied….
Here are the results.
Ten “yes”, 6 “no”, two non-voting, one absent--we had passed the Health Committee!
Now we must face the most difficult hurdle of all—appropriations…
Last year, our beautiful bill did not pass out of the Appropriations Committee.
Want to help me?
The Appropriations Chair is Assemblymember Felipe Fuentes.
Consider writing him a one-sentence email?
Please CC Jeff.Barbosa@asm.ca.gov, the staff consultant.
Something short and simple is fine, though long is great too.
But we really need you to write one sentence:
“Dear Appropriations Chairperson Fuentes:
“I support AB 1657, the one dollar traffic ticket add-on to fund the Roman Reed Spinal Cord Injury Research Act.”
Please do this today, before you forget.