SUPPORT FAXES NEEDED FOR PARALYSIS CUREBILL
Call or send Faxes of support for AB 714 to:
Chair: Mike Gatto P.O. Box 942849, Room 2114, Sacramento, CA94249-0043; (916) 319-2043
Fax: (916) 319-2143
Email: Assemblymember.Gatto@asm.ca.gov
Dear Friend of Paralysis Cure:
If you know about the Roman Reed Spinal Cord Injury Research Act, please send a FAX to the Appropriations Chair Mike Gatto, (916) 319-2143. Tell him you strongly support Assembly Bill 714 (Wieckowski, D-Fremont). Emails are also helpful, but less so.
If you do not know about the RR Act, read on—and then send your FAX of support.
May 1, this coming Wednesday, 9:00 AM, is the Appropriations Committee hearing on the bill: a sink-or-swim moment. If you possible can, JOIN US AT THE MEETING in Sacramento, Room 4203, CapitolBuilding. You will have an opportunity to voice your support, if you wish.
Now, background.
Assembly Bill 714 (Wieckowski, D-Fremont) would restore funding to the RR Act.
The program began in 2000, was unanimously renewed in 2005, and again in 2010—but the second time the funding was removed. We worked with Assemblyman Wieckowski to develop alternative methods to fund the program via traffic ticket add-ons. Last year’s proposal ($1 per ticket) passed both Assembly and Senate but Governor Brown vetoed it, saying penalties were not a good method to fund programs.
Few would deny the program has been an overwhelming success, even judged by purely financial terms alone.
Here is a recent update from Dr. Oswald Steward of the Reeve-IrvineResearchCenter at UC Irvine, who oversees the program:
“Since its inception in the year 2000, the Roman Reed Spinal Cord Injury Research Act has spent $17.1 million on research. This unique program has attracted $89,045,799 in additional funding from the National Institutes of Health and other sources: new money for California.”
Spending seventeen million while attracting eighty-nine million is unusual, to say the least. There is also the multiplier affect of public dollars going into the private economy.
AB 714 asks for $2 million a year from the general fund. According to the Legislative Analyst’s Office projection, this is not a lot of money, approximately five one-hundredths of one per cent of the estimated surplus. ($450 million).
California cannot afford NOT to fund cure research; the cost of doing nothing is too high.
A paralyzed person faces a mountain of medical bills, as much as $3 to $5 million in lifetime medical expenses. Most have no choice but to go on public assistance.
But a small improvement for a paralyzed person can be a huge help in financial savings. According to Dr. Aileen Anderson, Director of the Christopher and Dana Reeve Foundation Spinal Core Injury Core Lab, “even a treatment that restored as little as 1-2 levels of…function… could save $1.4 million over the lifetime of one patient.”
For example, my son is paralyzed in both upper and lower body. When he was first injured in 1994, we put him through grueling rehabilitation workouts (going deep in debt to do so) and an experimental medication (Sygen) then in clinical trials with the FDA.
Roman regained his triceps function. This allows him to drive an adapted vehicle instead of having to pay an attendant. He can help get himself out of bed in the morning, instead of needing a mechanical hoist.
Why single out spinal cord injury research for funding?
Connecting brain and body, the spine is central to our every bodily action and function. Accordingly, studying spinal cord injury benefits many conditions: multiple sclerosis, muscular dystrophy, ALS, spinal muscular atrophy (which kills children, often before the age of two), Alzheimer’s, Parkinson’s, traumatic brain injury, stroke, and more.
Approximately 5.6 million Americans are paralyzed today. Each of these people has a family, which shares the suffering. Just a shower and bathroom use can take 2 hours.
California funds medical research. For example, the California Breast Cancer Research Program (https://cbcrp.org/), established in 1993, has spent $230 million, to: “make grants for …researchers to find better ways to prevent, treat and cure breast cancer.”
Even as breast cancer research offers hope for colon and skin cancer sufferers, so paralysis research brings many neurological conditions closer to cure.
The RR program also offers a core laboratory where new scientists can learn and veterans can utilize outstanding equipment.
The program is not duplicative of the California stem cell program. While the RRAct was a pioneer in stem cell research, only 9 projects out of 129 involved stem cells. Most of the work revolves around the “everything else”: step-by-step foundational efforts.
For instance, when cure comes, how will the frozen muscles learn to work together again? We need cheap but effective rehab methodology. Instead of the treadmills on which paralyzed people “walk” with the aid of several (expensive) assistants, a new approach may duplicate that process robotically, bringing down the costs of cure.
Among other challenges, Roman Reed projects attempt to:
Find ways to limit damage after the accident: sadly, the body’s immune system attacks itself, further injuring the spinal cord. Reducing this would save function, so a person might walk out of a hospital instead of needing a wheelchair;
- promote regeneration, studying how the salamander re-grows its severed spine;
- Remyelinate (re-insulate) damaged spinal nerves; this was a huge success for us, resulting in the famous “rats that walked again”, featured on TV’s SIXTY MINUTES, and leading to the (successful) Geron trials for safety. While Geron ran out of money and quit, the process itself has been sold and is being renewed.
- Implant biological “bridges” around the spinal scar to guide re-growing nerves;
- Retrain the spinal cord itself by progressive weight-bearing, and electrical stimulation;
- Reduce pressure sores which can keep a person bedridden for months;
- Address bowel, bladder, and reproductive difficulties.
Folks, Roman, myself, Karen Miner and many more have been in this fight for nineteen years. I really think we are close to finding a cure.
Please help us fund the program to make it happen.