PARALYSIS CURE RESEARCH IN SUSPENSE… Keep What America Won!
By Don C. Reed
In a good movie, suspense is that delightful tickle that makes you sit forward in your chair and wonder what will happen next…
In the California legislative process, “suspense” is the place where bills go to die.
When a bill reaches the Appropriations Committee in Sacramento, if it has a money cost, even a small one, it is usually sent into what is called the “Suspense file”.
That is where the Roman Reed Spinal Cord Injury Research is right now—and it will die there– unless the Appropriations Committee decides to take it out, and let it go forward to be studied by the other committees in the lengthy legislative process.
AB 1933, the Roman Reed Spinal Cord Injury Research Act, has to be renewed, to get funding for five more years.
In a moment, I will say exactly how that can be done.
But first, there is a larger issue at stake here.
Cure research is at risk all across the country—even in places we already won.
Maryland got its stem cell program chopped in half.
New York’s spinal cord injury program is threatened with destruction.
Michigan’s hard-won stem cell freedoms are under attack from a six-pack of poison pill laws designed to slow down the research or stop it altogether.
Missouri faces a bill to make every joining of sperm and egg the legal equivalent of a full-fledged human—one of those so-called “personhood” bills which could (if enacted) have devastating consequences to research and human rights.
Connecticut just side-stepped a bullet when their stem cell funding was almost ended.
Even California’s terrific stem cell program faces one legislative act after another—I think we are on law number eight now—attempting to revise the law California approved.
We must keep what we have won. The hard work of patient advocates and courageous legislators must not be destroyed.
How is your state doing?
If you would like to send me information about your state’s effort, drop a line to firstname.lastname@example.org.
Because the problem has not gone away.
With an estimated one hundred million Americans suffering incurable (chronic) disease or disability, we face an ever-growing mountain of medical bills.
If there is no cure, there must be care. If we cannot cure the suffering, then we have no choice but to care for our loved ones.
Last year our national debt was $1.6 trillion—the same amount as our medical costs for chronic disease.
The lifetime medical care of just one paralyzed person (a high quadriplegic, like our late champion, paralyzed Superman Christopher Reeve) may exceed five million dollars.
And as for the research bill named after my paralyzed son…
“Roman’s Law”, which is California’s only spinal cord injury research program, is small, just $1.5 million a year, less than the cost of caring for one quadriplegic’s lifetime care.
Every five years we must fight for the program’s renewal. That means five committee votes, plus the full votes of Assembly and Senate. We passed the Assembly Health Committee with 100% support.
Roman and I personally visited each Committee member’s office twice, plus we had the backup of letters from many of our friends, which was so important.
Those of you who wrote before—thank you—and please email that same letter again!
We are not alone. Patient advocates from across the country—Texas, Missouri, New Jersey, New York and more– stand beside us—and so must we stand beside them.
Only we can do this. Roman’s law has been supported by the patients and family of California, and our country.
It’s easy. Below are the email addresses: wheelchair warrior Karen Miner got these for us: just cut and paste your letter for each one. Takes about 15 minutes, total.
It does not have to be a long letter, just a couple sentences will make an impact—because most people do not write at all…
If all you say is, “My family supports AB 1931, the Roman Reed Spinal Cord Injury Research Act,”—that is important. That will help. If you want to say more, even better.
If you want to do it perfect, send a hard copy letter to: Felipe Fuentes, Chair, Assembly Appropriations Committee, California State Assembly, State Capitol Sacramento, CA 95814, with an email to the bill sponsor (Majority Leader Alberto Torrico)’s aide: email@example.com, and email the rest. Or, just email everybody. Any contact helps…
Please consider sending this to your email list—we need everybody’s help.
And send your short email (backup information follows) to:
|Felipe Fuentes – Chair Assemblymember.Fuentes@assembly.ca.gov
|Phone: (916) 319-2039
|Connie Conway – Vice Chair Assemblymember.Conway@assembly.ca.gov
|Phone: (916) 319-2034
|Charles M. Calderon
Below is background information.
BACKGROUND: California’s Roman Reed Spinal Cord Injury Research Act of 1999 is up for renewal this year. This law paid for the first state-funded embryonic stem cell research in America, re-insulating damaged spinal nerves. Laboratory rats so badly paralyzed they could only drag themselves are scampering now; the study may go to human trials this Fall with Geron. The same research may also help cure Spinal Muscular Atrophy, (SMA, a vicious condition which kills children, often before the age of two), Multiple Sclerosis (MS), spina bifida, and other disorders.
“Roman’s Law” has helped train new scientists with fellowship grants, and assisted veterans to develop new approaches, from a variation of the Petri dish to pioneering new methods of rehabilitation and repair. In addition to 175 published scientific papers, two patents pending which may advance the biomedical industry, and several major scientific breakthroughs, our research brought new money to California. Here’s how it works:
The program spends $1.5 million a year, but it also attracts matching grants from the National Institutes of Health and other sources. Over ten years, our total funding of $14 million was matched by $60 million from out of state—new jobs and revenue for California.
The last time our law was up for renewal, we received virtually unanimous approval—a yes vote from every Assemblymember and Senator except one! This year, because of the financial thunderstorms in Sacramento, the votes will be very close, and could go either way.
“Roman’s Law” is beautiful; we must not let it die. Senator Alberto Torrico (D-Fremont) is leading the charge: we must not let him fight alone. He needs support from individuals and groups everywhere—paralysis knows no boundaries.
Want to see the program? Go to https://www.reeve.uci.edu/Research/RomanReed.aspx
Letters are best, but emails are good too. Group endorsements are wonderful, but if you cannot get approval through the group’s process in time, you can write as an individual member of the group, for purposes of identification: that does not commit your group.
Even the shortest letter will help: “My family supports AB 1931, the renewal of the Roman Reed Spinal Cord Injury Research Act” has impact—please send it.
Here is the press release of the bill.
FOR IMMEDIATE RELEASE CONTACT: Jeff Barbosa
February 17, 2010 916-319-2723
TORRICO BILL WILL EXTEND FUNDING
FOR INNOVATIVE SPINAL CORD INJURY RESEARCH
Named after a Chabot College football player injured during a game, the Roman Reed Program supports scientific research in neural regeneration.
Sacramento – Assembly Majority Leader Alberto Torrico (D-Fremont) introduced legislation to extend funding for research into spinal cord injuries. Funding for the Roman Reed Spinal Cord Injury Research Act is due to expire next January.
Torrico’s AB 1931 will extend funding for an additional five years.
“About 646,000 Californians live with paralysis from various neurological conditions and the Roman Reed program funds critical research throughout the state that could improve their quality of life and their ability to achieve everyday tasks,” Torrico said. “Leveraging the $13.9 million in state funds allocated so far, researchers have brought in about $60 million in additional grants from the National Institutes of Health and other sources to enhance our knowledge and understanding of spinal cord injuries.”
The program is named after Roman Reed, a former Chabot College football player who suffered crushed vertebrae during a game. Reed became an advocate for spinal cord injury research and in 2000 the Roman Reed Spinal Cord Injury Research Act was signed into law and later renewed in 2005.
The research funds are allocated to the University of California and administered by the Reeve-Irvine Research Center at the University of California, Irvine. To date, more than 300 Californians have participated in 120 research projects. Each year, scientists in the spinal cord injury research arena gather at a “Meet the Scientists” forum sponsored by the program to discuss the best methods to collaborate on creative spinal cord research.
“By extending the funding for an additional five years, the bill will help continue what California began in 2000,” Reed said. “This research will make an enormous contribution to those of us suffering from spinal cord injury paralysis.”
Research partially funded by the program, conducted by the University of California, San Francisco, University of California, San Diego and UCLA, among others, has studied how the nervous system can use new pathways to issue commands to move; how drugs that block the body’s immune response to the initial trauma could increase the chance of recovery from spinal cord injuries; and when some of the research could find its way to human clinical trials. ###
Roman Reed Spinal Cord Injury Program Fact Sheet
California is home to approximately 646,000 people living with paralysis from various neurologic conditions. Nationwide, someone suffers a traumatic spinal cord injury every 41 minutes (based on an estimated annual incidence of 40 new injuries per million population) leading to a significant loss of earning potential and high medical costs associated with their disability. Furthermore, a recent national study estimates that 1.3 million Americans live with paralysis due to spinal cord injuries1, which is close to 5 times higher than previously reported statistics. Given this increasing number of paralyzed people, rising health care costs with caregiver needs and loss of income potential, the total cost to the State of California approaches $ 1.5 billion per year. Promising research-driven therapies could greatly improve the quality of life and functional capacity of SCI individuals, thereby lessening this tremendous financial burden to the State.
The Roman Reed Bill was signed in September 2000, and was renewed in 2005, through AB1794, which was signed by Governor Schwarzenegger in September 2004. Over its 9-year history, the fund has provided approximately $1.5 million per year for spinal cord injury research in the State of California. The Roman Reed Research funds are allocated to the University of California (UC), and the UC Office of the President allocates the Reeve-Irvine Research Center at the UC, Irvine to administer the funds.
Roman Reed Program:
A portion of the Roman Reed funds support the Roman Reed Core Laboratory, allowing for the rapid translation of ideas into research, by making it possible for any scientist with a novel idea to immediately undertake experiments in well-developed animal models. The second portion is used to launch unique, creative, research projects by scientists throughout the state of California. The program provides seed funds for highly innovative projects that are stepping stones for new federal and other funding.
Roman Reed Research Awards:
Between 2000 and 2009 over 300 Californians have participated in 120 Roman Reed Research projects. During that time, 64 graduate students have been supported as Roman Reed Fellows.
Over 1000 people have participated in Roman Reed sponsored public events over the past 9 years. The goal of the annual “Meet the Scientists” Forum is to bring the spinal cord injured community into the research arena.
The total amount of Roman Reed funding from the program’s beginning in 2000 through 2009 is $13,880,100. These funds have been leveraged into $59,969,394 in new funds being brought into the state through federal and other grant sources; an additional $7,351,391 is pending.
 Christopher and Dana Reeve Foundation, 2009
 National Spinal Cord Injury Statistical Center, 2009