Paralysis: Pain, Price, and a Prescription for Cure
Every paralyzed person is unique. His or her body may have areas of partial or total numbness, so skin sensations do not warn of danger.
My paralyzed son Roman Reed has twice burned himself severely by touching something hot and not realizing it, until he smelled the smoke. Only later did the pain begin -- and then it came unpredictably, as if bouncing back and forth inside the body. Others may have neuropathic pain, an endless itching burn, like having your skin sandpapered off, and gasoline poured on.
Last week, Roman and I trekked up to Sacramento for the do-or-die Appropriations Committee hearing. A panel of Assemblymembers would give us sixty seconds apiece to make our case: explaining why Assembly Bill 714 (Wieckowski, D-Fremont) should restore funding ($2 million annually) to the Roman Reed Spinal Cord Injury Research Act.
Roman used his moment to speak of the pain endured by parents: like Bill and Victoria Strong, as they battle for the life of their daughter Gwendolyn, five years old.
Gwendolyn has a singularly vicious form of paralysis called Spinal Muscular Atrophy (SMA). It is progressive, and has worsened now to the point where she can only move her eyes. But her parents are fighting for her, involving her in life as fully and richly as possible, while encouraging research to bring cure fast. (For more on her family effort, visit: http://theGSF.org.)
For my sixty seconds, I focused on the money costs of paralysis: as much as three to five million dollars (lifetime) for just one paralyzed person -- and there are 5.6 million paralyzed Americans, roughly 650,000 of whom live in California.
AB 714 would provide two million dollars a year to the Roman Reed Spinal Cord Injury Research Act -- less than the cost of just one paralyzed person's lifetime care.
Incredibly, our small program has made an actual financial profit for California. For every dollar spent by the Roman Reed Act, an additional five dollars came in from the National Institutes of Health and other sources. A small grant (if successful) makes the scientist eligible to receive larger grants from elsewhere. Our "seed money" ($15 million over the life of the program) attracted an additional $84 million in matching and add-on grants, new money for the state.
Above all, "Roman's Law" has achieved results. In addition to 175 published papers -- each a piece of the puzzle of cure, two patents pending, two new companies providing jobs and revenue, benefits to our educational system; and a boost to the biomedical industry, we also had a glimpse of the future, a scientific breakthrough, the re-insulation of damaged nerves. (see Dr. Hans Keirstead's work.)
Here is my non-scientist's understanding of what happens. Think of a nerve like an electric wire, which only works if it has insulation. The copper wire needs a plastic wrap around it, or the electrical current will short-circuit. Bzzzt!
Similarly, our nerves need insulation from a fatty acid called myelin. Without the myelin insulator, nerves cannot carry messages between brain/spine/body. This is why the skin goes numb and the muscles don't work.
This failure of the nerves to "re-myelinate" (self-insulate) is central to many forms of paralysis, including the SMA attacking Gwendolyn, and Multiple Sclerosis (MS), which recently took the life of America's beloved Mouseketeer, Annette Funicello.)
As Assemblymember Bob Wieckowski spoke, I recalled how hard and long he has worked on this bill: more than two years continuing effort. Every neurologically-challenged person in the world owes Bob Wieckowski (and John Dutra before him) a debt of gratitude.
Members of the audience took the stand in support. Unfortunately I did not get their names, being a little nervous at the moment, but they were there, and they made a difference.
I worried that the bill might be politicized, as happens so often in current Washington politics.
Would California's paralysis program be shot down, just because it came from a Democrat? To win, we needed a 2/3 majority in both Assembly and Senate, friends on both sides of the aisle.
In the ten years of its existence, "Roman's Law" has been enthusiastically supported by both parties, Republicans and Democrats alike. The Act was renewed twice (although the second approval came with no funding, sigh... ) with virtually unanimous support: one person voted no.
But that was then. Would the seemingly poisonous political climate in Washington be duplicated here?
Chairman Michael Gatto called for questions and comments.
The first to speak was Vice Chair Diane Harkey, former Mayor of Dana Point; not only was she a Republican, and a conservative one, but she hails from what may be the most Republican district in our state (AD-73).
I held my breath. What would she say?
Assemblywoman Harkey thanked Assemblymember Wieckowski for bringing the bill. She said AB 714 was the kind of legislation she always liked to support, and that the amount of funding requested was reasonable.
Her voice was clear, strong, intelligent, caring -- and she liked our bill! I breathed again.
Encouraging words were also spoken by Democrat Dr. Richard Pan (Chairperson of the Assembly Health Committee), who even explained some of the technical aspects of the bill. In addition to the honor of having the Chair of the Health Committee support our bill, it was an absolute delight to witness his depth of knowledge: he understood the bill so deeply he could translate its impact for the other members.
But I could not stop thinking about Ms. Harkey's positive stance.
I looked up her website bio, and found the following:
"Serving as a member of the Assembly Select Committee on Biotechnology, she is working across the aisle to implement policies meshing academic achievement in our universities and community colleges with real-world opportunities for Californians in the biotech sector."
She was a pro-biomed Republican. In addition to concerns about paralyzed constituents, she understood the business significance of California's second-largest (and growing!) industry.
So, will AB 714 be approved to go forward, or be shot down? That will be decided in a few days. Because AB 714 involves money, it automatically goes into the "suspense file", meaning private discussions would take place. We would not know the outcome for about three weeks.
Want to help? Committee Chair Mike Gatto needs to hear from you. Send a FAX (best) to: (916) 319-2043, or email him at Assemblymember.Gatto@assembly.ca.gov.
Tell him you strongly support Assembly Bill 714 to restore funding to the Roman Reed Spinal Cord Injury Research Act. Also, be sure to include your phone number. They won't call you, but that number lets them know you are a real person, not some mass marketing machine.
Do it now, please, before the pressures of time sweep you away.
Help us defeat paralysis in our lifetime.