Friday's victory in the California Assembly puts us a giant step closer to a million dollars a year for paralysis cure research.
We passed the Appropriations Committee, but now we must pass the full Assembly-- would you consider sending an email or two? I promise it will not be difficult!
CONTACT REPUBLICANS—Help California Pass Paralysis Cure Research Bill
By Don C. Reed
Great news for paralysis research! On Friday, California’s Roman Reed Spinal Cord Injury Research Act passed the Appropriations Committee—a huge step closer to one million dollars a year for paralysis cure research!
But we have only a couple of days before the full Assembly votes.
That crucial vote will almost certainly come this week, perhaps Wednesday or Thursday.
Needing a 2/3 majority, our hope rests with a bipartisan success, especially our Republican allies.
Fortunately, Republican Diane Harkey is the co-author of our bill. Ms. Harkey is the kind of pro-biomed Republican that California needs, and her leadership is crucial.
Patient advocates must help. Your quick email could make the difference. At the bottom of this page is a letter I wrote, please feel free to use any part of it.
All we need is a statement of support. Something like this would be very helpful
“I strongly support AB 714, to put one million dollars into the Roman Reed Spinal Cord Injury Research Act, attempting to cure paralysis, which affects 5.6 million Americans.”
Below are emails of the Republicans of the California Assembly. If you only have time to send one email, please send it to Minority Leader Connie Conway (R-Tulare). You can reach her at: firstname.lastname@example.org.
If you have time, send more, and feel free to use the same letter for each one; just change the name and cut and paste the email address below. (Tip: be sure and put your phone number in the letter at the top, so they know you are not a mechanical e-mailer.)
AD 1: Brian Dahle email@example.com
AD 3: Dan Logue firstname.lastname@example.org
• AD 5: Frank Bigelow email@example.com
• AD 6: Beth Gaines firstname.lastname@example.org
• AD 12: Kristin Olsen email@example.com
• AD 23: Jim Patterson firstname.lastname@example.org
• AD 26: Connie Conway (Minority Leader) email@example.com
• AD 33: Tim Donnelly firstname.lastname@example.org
• AD 34: Shannon Grove email@example.com
• AD 35: Katcho Achadjian firstname.lastname@example.org
• AD 38: Scott Wilk email@example.com
• AD 40: Mike Morrell firstname.lastname@example.org
• AD 42: Brian Nestande email@example.com
• AD 44: Jeff Gorell firstname.lastname@example.org
• AD 55: Curt Hagman email@example.com
• AD 60: Eric Linder firstname.lastname@example.org
• AD 67: Melissa Melendez email@example.com
• AD 68: Don Wagner firstname.lastname@example.org
• AD 71: Brian Jones email@example.com
• AD 72: Travis Allen firstname.lastname@example.org
• AD 73: Diane Harkey email@example.com
• AD 74: Allan Mansoor firstname.lastname@example.org
• AD 75: Marie Waldron email@example.com
• AD 76: Rocky Chavez firstname.lastname@example.org
• AD 77: Brian Maienschein email@example.com
Below is my letter to Minority Leader Conway:
Dear Minority Leader Conway:
My son Roman Reed broke his neck playing college football, September 10th, 1994, and became paralyzed from the shoulders down.
Please support AB 714: which just passed the Appropriations Committee. AB 714 will restore $1 million annual funding for the Roman Reed Spinal Cord Injury Research Act, which funding was removed two years ago for budget reasons.
We are honored that Diane Harkey (AD 73) co-authored our bill. Her leadership represents for me the pro-biomed leadership our state requires.
The costs of paralysis are staggering. If divided equally, paralysis could cost every Californian as much as $131.57 in annual medical bills.
Five point six million Americans are paralyzed. That is 1.9 per cent of the population—almost one in fifty. From our state population of 38 million, we can estimate 760,000 paralyzed people.
Here are three major causes of paralysis, with their lifetime medical costs.
1. Traumatic brain injury costs roughly $4.2 million for a patient over his or lifetime.
2. Multiple sclerosis sufferers face lifetime bills of about $1.2 million each.
3. Spinal cord injury costs can run as high as $5 million dollars per person.
These are lifetime figures. To get a rough idea of the financial nightmare,
Assume a life span of 70 years, and (and a low estimate of medical expenses, just half a million dollars each) caring for 760,000 paralyzed citizens may cost California $5 billion a year— or an average cost of $131.57 per Californian.
Many paralyzed Californians turn to government for help, which means taxpayers carry the burden.
Is not cure a better way? Even a partial cure is hugely helpful.
As one expert put it: “even a modest treatment… could save $770,000 over the lifetime of one patient. … to impact quality-of-life and independence of (the) patients, and reduce the shared costs of health care.”
--Aileen Anderson, Director, Christopher and Dana Reeve Foundation SCI Core Lab
Example: when my son Roman Reed was first paralyzed, he had no triceps function. He could not straighten out his arms. But with major rehabilitation and the most advanced medication available at the time, his arm control returned. Today Roman can bench press 225 pounds—and drive an adapted vehicle—instead of having to hire an attendant.
Research for advanced medication and directed exercise are key ingredients of the Roman Reed Spinal Cord Injury Research Act—which AB 714 would fund.
Until its funding was removed, “Roman’s Law” was an overwhelming success in all respects, including financial. How many programs return five times their investment?
Since it began in 2000, the Roman Reed Spinal Cord Injury Research Act has spent a total of $15.1 million. This funded small “seed grants” for California scientists. When their work succeeded, the Federal government provided an additional $84 million in matching grants—new money for the California.
With 300 scientists having worked on RR grants, and a dedicated laboratory at UC Irvine, the research advanced biomedicine, a foundational industry in our state.
Because the spine is central to neurological disorders, spinal cord research applies to all forms of paralysis: multiple sclerosis, stroke, traumatic brain injury, spinal muscular atrophy, ALS (Lou Gehrig’s disease), Alzheimer’s, and more. The knowledge is shared: 175 peer-reviewed published scientific papers are each a piece of the puzzle of cure, what works and what doesn’t: a small library of paralysis information.
California’s investment has brought America closer to cure. Our research was featured on TV’s SIXTY MINUTES, the first use of President George W. Bush’s approved stem cell lines, the famous paralyzed rats which walked again.
But most of our work has nothing to do with stem cells.
In addition to a multi-pronged approach to heal chronic paralysis, we focus on practicalities like lowering the costs of physical therapy, and reducing blood pressure irregularities, such as killed the great Christopher Reeve, whose loss we mourn.
Reeve supported the Roman Reed Spinal Cord Research Act, saying: “One day, Roman and I will stand up from our wheelchairs, and walk away from them forever.” Cure did not come in time for the paralyzed Superman, but the flame of his faith still guides our way. California has taken up the torch. We must not let that flame die out.
Please support Assembly Bill 714: restore funding to the Roman Reed Spinal Cord Injury Research Act: your legislative legacy.
For financial as well as humanitarian reasons, help us end paralysis in our lifetime. It is the fiscally responsible way to lower medical costs.
Don C. Reed