THREE DAYS TO PARALYSIS CURE: this weekend and Monday for AB 190
By Don C. Reed
For 17 years, I have worked to find a cure for paralysis—and it is all coming down to three days—today, Sunday, and Monday. What we do in these next three days will determine the success or failure of paralysis cure in your lifetime and mine.
Tuesday, April 5th, is the vote. If Assembly Bill 190 (Wieckowski, D-Fremont) passes the public safety committee, (we need 4 of 7 votes to pass) the Roman Reed Spinal Cord Injury Research Act will be funded– and I believe I will see my son walk again.
If the vote fails, I will still keep fighting, as will Roman—but it will most likely be for the next generation.
Here’s why.
AB 190 will fund the Roman Reed program, $3 per traffic ticket to curing spinal cord injury (SCI) research for cure. That targeted money– $11 million year—will attract matching funds and add-on grants from the National Institutes of Health (NIH) and other sources, as it has always done.
The California stem cell program will of course follow the research closely. Any portion of the cure which may have to do with stem cells will get their full attention; that is what they do.
The RR Act funds primarily the non-stem cell stuff. (Only 3% of our funding has gone to stem cells, see below for more info.)
RR Act plus national funding plus California stem cell program plus private investment when cure becomes a product—that is the perfect storm of cure.
But it all depends on AB 190.
Help us make it happen. Give me your weekend—you will never spend your time more usefully.
A committee of seven: we need four votes. By my count we have three—Cedillo, Mitchell, and Skinner—we need one more. The two Republicans—Knight and Hagman—have not signaled any signs of support. If you know them, contact them, can’t hurt. But right now I count them neutral or negative—and we need four positive votes.
This weekend we want everyone to contact 2 people:
1. Jerry Hill (FAX 916-319-2119, PHONE 916-319-2019) for his crucial yes vote on AB 190, we cannot do it without his support: fax him, plus send an email to his chief legislative aide: Gibran.maciel@asm.ca.gov.
2. Tom Ammiano (FAX-916-319-2113, PHONE 916-319-2013). plus emails to his legislative aide: misa.yokoi-shelton@asm.ca.gov We need him to either vote for us, or be neutral: as chair, if he opposes the bill, one committee member will vote against us. But if he stays neutral, that person will vote for us.
Jerry Hill is the key vote. With him, we win. Without him, we lose.
If you have contacted him once, please do so again.
AND– THEN GO THROUGH YOUR PHONE BOOK FOR FRIENDS WHO MIGHT DO THE SAME.
Who do you know that would send an email– as a personal favor to you?
Have them call Jerry Hill too.
We have today, tomorrow and Monday—will you spend a couple hours doing emails something that could be spectacularly effective in the cause paralysis cure?
With your help, THIS WEEKEND, we can make the difference so many thousands of advocates have worked toward for so many years.
Send your two FAXes, send your two E-mails—and contact as many as friends as you can think of.
Everything depends on you, me, and the next three days.
P.S. As this is written, Roman (in his new second-hand van to replace the crashed older one) is driving down the coast to do an interview, to try to spread the word about AB 190.
Below is a sample letter, and a description of the program, and five main points.
SAMPLE LETTER:
Dear Assemblymember:
I urge you to support Assembly Bill 190, (Wieckowski, D-Fremont) which would fund the Roman Reed Spinal Cord Injury Research Act through a small ($3) fine for reckless driving, cause of much paralysis in our state. There is no tax impact.
The problem is huge: California is home to an estimated 650,000 individuals suffering paralysis. As the condition is staggeringly expensive (quadriplegics face lifetime medical costs of three to five million dollars each, most turn to the state for help, with Medi-Cal and Medicare. Reduction of such costs helps everyone.
Revenue-positive, the RR Act has attracted funding from out of state amounting to more than four times its costs: a ten-year investment of $14.6 million has brought in $63.8 million in add-on grants from the National Institutes of Health and other sources, new money for our state.
The Roman Reed Program funds projects to reduce injury severity and promote recovery of function after spinal cord injury through a broad range of interventions. Importantly, we do NOT duplicate the California stem cell program. Only a small percentage (less than 3%) of the therapies explored over the 10 year history of the program involve stem cells.
One major focus is on early intervention to reduce secondary degeneration. Like heart attack and stroke, a spinal cord injury causes progressive damage that can be prevented, and reduce the burden of disability. (In the days and weeks after the accident, the body’s immune system fights back in a “secondary wave of injury”, attacking itself, literally chewing into the spinal column, often doubling the original damage with accompanying loss of function. Reducing that secondary injury could mean the difference between walking and a wheelchair.)
Another major research focus is on regeneration of the long connections of the spinal cord. Damage to these connections causes loss of bowel, bladder, and sexual function, the ability to breathe (for people like Christopher Reeve) as well as loss of the capacity to feel touch. Regeneration of connections is NOT addressed by stem cell therapies.
Research supported by the Roman Reed Program promotes recovery through technological advances such as brain/computer interfaces, and biomechanical innovations including robotics. One such project involves a helmet and an electronic glove: the patient’s brain waves control an implanted mechanical grip, returning partial use of the hand. These therapies will almost certainly be important for other neurological disorders including stroke, traumatic brain injury including the injuries suffered by our troops, and neurodegenerative diseases like Alzheimer’s Disease.
Please support Assembly Bill 190. In these grim times, it is a bright light of hope, one we can ill afford to extinguish
Your Name
BRIEF DESCRIPTION OF ROMAN REED ACT, to be funded by AB 190.
The Roman Reed Spinal Cord Injury Research Act: AB750/AB1794/AB190
Since its inception in 2000, the Roman Reed Program has provided $14.6 million for spinal cord injury research in California. This seed funding attracted add-on grants and other additional funding of $63,867,216 from the National Institutes of Health and other out-of-state sources, creating new jobs. It was twice renewed by near-unanimous votes of the Assembly and Senate.
Spinal cord injury causes a significant drain on state resources: an estimated five million six hundred thousand Americans suffer some form of paralysis, and 1,275,000 live with a catastrophic spinal cord injury. Financial costs are devastating. Medical costs during the first year after a spinal cord injury are approximately $775,000, and as much as three million dollars over the life of a quadriplegic, which exhausts insurance caps. Consequently, almost all people with a spinal cord injury end up on Medical and Medicare. Improving function and health of people with SCI will reduce this financial burden to the state.
The Program is run by the University of California system and directed by Oswald Steward at the Reeve-Irvine Research Center at UC Irvine. The Program provides small grants (seed funding) for California scientists and a core laboratory for spinal cord injury research at the Reeve-Irvine Research Center.
1) Research grants are determined by a panel of out-of-state experts to preclude conflicts of interest. Of a total 289 applications, 129 were awarded grants totaling $11,795,292. Additionally, 68 fellowships were awarded to graduate students working on spinal cord injury for an aggregate cost of $1,607,487. These grants achieved efficient leveraging, resulting in 71 new grants from NIH and other sources, with a total $63,867,216 in new funding brought into California.
2) The Roman Reed Core Laboratory, a 6,000 square foot lab at UC Irvine, provides state of the art equipment, animal facilities, and trained personnel: where new scientists can learn, and established experts can work .The lab was dedicated on March 1, 2002, in a ceremony marked in the United States Congressional Record. The lab has hosted both individual projects (24) and collaborative efforts (18) as a central hub of spinal cord injury/nerve repair research.
Targets of funded research: develop neuroprotective interventions to reduce the wave of secondary that occurs in the hours and days following a spinal cord injury; restore bowel and bladder control; reduce chronic pain; restore sexual function; prevent life-threatening blood pressure irregularities; restore myelin insulation around damaged nerves; prevent formation of the spinal scar, which blocks nerve messages between brain and body; replace missing nerve cells; implant bio-engineered frameworks to bridge the gap in the damaged spine; develop neurotrophins (nerve fertilizer) and other interventions to promote nerve re-growth; reduce bone-loss; test FDA-approved medications which may have an SCI application, and develop new activity-based therapies to improve function and overall health.
Results: 175 peer-reviewed publications. Research on activity-based therapies led to new therapies which are a sea change for people with chronic spinal cord injury. These therapies improve quality of life, reduce secondary health complications, and save the state money due to reduced health care costs. Other discoveries supported by the program are in the pipeline toward translation including: 1) the world’s first clinical trial for stem cells for spinal cord injury; 2) a treatment initially developed for spinal cord injury is in clinical trials for inflammatory bowel disease; 3) new surgical techniques have been developed to treat people with nerve injuries.
MAIN POINTS IN BRIEF
- AB 190 is fiscally responsible: the Roman Reed Spinal Cord Injury Research Act has spent $14.6 million of the taxpayers’ money—which investment brought in additional funding of $63.8 million in add-on grants from the National Institutes of health and other sources—new money for California. How many programs bring in four times as much money as they spend?
2. The funding mechanism ($3 add-on to reckless driving violations) is appropriate, as car crash is the cause of an estimated 46% of all spinal cord injuries, and even more (56%) of child injuries. This zero-tax mechanism penalizes no one but lawbreakers, who put everyone at risk with their bad driving choices.
3. Spinal cord injury is especially devastating for the poor, who cannot afford to hire an attendant to care for their loved ones. What help they get must come from the family, and inevitably involves already overburdened governmental services like Medi-cal and Medicare.
4. The Roman Reed program is a proven success. From the famous rats that walked again (featured on 60 Minutes), to 175 published papers in peer-reviewed journals, to new methods of using robotics, to much more.
5. The need is immense. Paralysis affects 5.6 million Americans, 650,000 of whom live in California. Many suffer chronic pain, bowel and bladder problems, life-threatening blood pressure irregularity, skin break down—and family breakup from the endless stress. One paralyzed person may face $3-5 million in lifetime medical costs, $775,000 in the first year alone. As few can afford such expenses, most paralyzed Californians end up on Medi-Cal or Medicare, which greatly increases the taxpayers’ costs.