It is Monday morning as this is written, 3:47 a.m. On Wednesday or Thursday of this week, the full California Assembly will vote yes or no on paralysis cure research: A bill called AB 714 (Wieckowski, D-Fremont) which will fund (one million dollars a year) the Roman Reed Spinal Cord Injury Research Act -- or not.
To pass we need 54 votes, a 2/3 majority of the 80-member assembly.
In the Assembly today, there are 54 Democrats and 27 Republicans.
We need bipartisan support.
Make no mistake: I am proud to be a Democrat, and have been so all my voting life. Great-hearted champions like the author of AB 714 (Bob Wieckowski, D-Fremont) remind me why.
But there are times when partisan divides can only hurt, and this is one. Also, we cannot count automatically on any vote; California has been too short of money for a long time, and every one has their favorite programs to help people -- so how do we win?
In the past the Roman Reed Spinal Cord Injury Research Act has passed unanimously -- both sides in complete agreement -- every vote going our way. We need such times again. We need every vote, no matter his or her political persuasion.
Fortunately, the co-author of AB 714 is strongly pro-biomed Republican Diane Harkey. She cares deeply about such issues, and her leadership is crucial.
As always, patient advocate involvement is make-or-break for this bill.
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. But all we really need is a one-sentence statement of support. Something like: "I strongly support AB 714, to put one million dollars a year into the Roman Reed Spinal Cord Injury Research Act, attempting to cure paralysis, which affects 5.6 million Americans."
Because there is so little time and because most Democrats are already up to speed on the issue, it has been suggested to me that we focus on outreach to the GOP side of the aisle for right now.
Below are email addresses 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: assemblymember.conway@assembly.ca.gov.
Here are the emails of all the Republican California state Assemblymembers.
In the email's subject bar, put: SUPPORT AB 714.
- AD 1: Brian Dahle: assemblymember.dahle@assembly.ca.gov
- AD 3: Dan Logue: assemblymember.logue@assembly.ca.gov
- AD 5: Frank Bigelow: assemblymember.bigelow@assembly.ca.gov
- AD 6: Beth Gaines: assemblymember.gaines@assembly.ca.gov
- AD 12: Kristin Olsen: assemblymember.olsen@assembly.ca.gov
- AD 23: Jim Patterson: assemblymember.patterson@assembly.ca.gov
- AD 26: Connie Conway (Minority Leader): assemblymember.conway@assembly.ca.gov
- AD 33: Tim Donnelly: assemblymember.donnelly@assembly.ca.gov
- AD 34: Shannon Grove: assemblymember.grove@assembly.ca.gov
- AD 35: Katcho Achadjian: assemblymember.achadian@assembly.ca.gov
- AD 38: Scott Wilk: assemblymember.wilk@assembly.ca.gov
- AD 40: Mike Morrell: assemblymember.morrell@assembly.ca.gov
- AD 42: Brian Nestande: assemblymember.nestande@assembly.ca.gov
- AD 44: Jeff Gorell: assemblymember.nestande@assembly.ca.gov
- AD 55: Curt Hagman: assemblymember.hagman@assembly.ca.gov
- AD 60: Eric Linder: assemblymember.linder@assembly.ca.gov
- AD 67: Melissa Melendez: assemblymember.melindez@assembly.ca.gov
- AD 68: Don Wagner: assemblymember.wagner@assembly.ca.gov
- AD 71: Brian Jones: assemblymember.jones@assembly.ca.gov
- AD 72: Travis Allen: assemblymember.allen@assembly.ca.gov
- AD 73: Diane Harkey: assemblymember.harkey@assembly.ca.gov
- AD 74: Allan Mansoor: assemblymember.mansoor@assembly.ca.gov
- AD 75: Marie Waldron: assemblymember.waldron@assembly.ca.gov
- AD 76: Rocky Chavez: assemblymember.chavez@assembly.ca.gov
- AD 77: Brian Maienschein: assemblymember.maienschein@assembly.ca.gov
Below is my personal 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 on Friday 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.
Assume a (low) estimate of $500,000 each for medical costs, and a lifespan of 70 years.
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, so 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 LabExample: 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. Research sponsored by "Roman's Law" was featured on TV's SIXTY MINUTES. This was 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 paralysis, we focus on everyday 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.
Thank you,
Don C. Reed