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Help California earn a million dollars for paralysis research?

DO YOU KNOW THESE REPUBLICANS?  Earn a Million for Paralysis Research!

By Don C. Reed

Below are the Republican Assemblymembers of California. If we can persuade just a few to vote YES on Assembly Bill 714 (Wieckowski, D-Fremont), we may be able to bring together one million dollars for spinal cord injury research—and leverage millions more.

Friday I sat in the gallery of the California Assembly Appropriations Committee waiting to hear the decision on AB 714, which was “in suspense”, meaning it was about to live or die.

It was a long wait. I went for a coffee, came back, went to the restroom, came back,  took a little unscheduled nap—and suddenly the Appropriations Chair, Mike Gatto, was speaking. I sat bolt upright as he said:

“360 bills to be decided; only about sixteen per cent will be funded.”

Then he read off the numbers of the bills, each with a ten-word description of its intent.

I suffered agonies as those last moments ticked away. And then at last:

“AB 714 to put two million dollars a year into the Roman Reed Spinal Cord Injury Research Act—do pass—with an amendment to reduce funds to one million dollars.”

We did not die. Funds were cut in half, but the program had a chance to live. Appropriations is generally the toughest committee; we had a chance now.

Then I remembered we had to pass the full body of the Assembly next.

That vote will almost certainly come next week, Wednesday or Thursday.

With only hours to work on it, and needing an almost impossible 2/3 majority, our only hope is Republican allies.

Fortunately, Republican Diane Harkey co-authored our bill. She is the kind of pro-biomed Republican that California needs, and her leadership is crucial.

But the patient advocates must help. A 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 statement of support.  “I strongly support AB 714, to put one million dollars into the Roman Reed Spinal Cord Injury Research Act, so that it may attempt to cure paralysis, which affects 5.6 million Americans, and may cost California as much as $5 billion (with a B!) a year.”

Below are the Republicans of the California Assembly.  If you know any of them, click on their name and contact them through their website. Or: try the lobbyist maneuver.

Almost all California political leaders can be reached by one of two email addresses.

For example, if you only have time to reach one, their leader is Connie Conway (R-Tulare).  You can reach her at one of two emails, please send your e-mail to both:

Connie.Conway@asm.ca.gov OR, assemblymember.conway@asm.ca.gov.

TIP: You can use that format for any or all of the people below. Roman and I will commit to visiting each of their offices in person next week—would you be willing to send at least some of them an email? You can use the same letter for each one of course, just change the name and cut and paste. (Be sure and put your phone number in the letter at the top, so they know  you are a real person and not a mechanical emailer.)
•    AD 1: Brian Dahle
•    AD 3: Dan Logue
•    AD 5: Frank Bigelow
•    AD 6: Beth Gaines
•    AD 12: Kristin Olsen
•    AD 23: Jim Patterson
•    AD 26: Connie Conway (Minority Leader)
•    AD 33: Tim Donnelly
•    AD 34: Shannon Grove
•    AD 35: Katcho Achadjian
•    AD 38: Scott Wilk
•    AD 40: Mike Morrell
•    AD 42: Brian Nestande
•    AD 44: Jeff Gorell
•    AD 55: Curt Hagman
•    AD 60: Eric Linder
•    AD 67: Melissa Melendez
•    AD 68: Don Wagner
•    AD 71: Brian Jones
•    AD 72: Travis Allen
•    AD 73: Diane Harkey
•    AD 74: Allan Mansoor
•    AD 75: Marie Waldron
•    AD 76: Rocky Chavez
•    AD 77: Brian Maienschein

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.

Because the costs of paralysis are staggering. If divided equally, which of course they are not,  paralysis could cost every Californian as much as $131.57 in annual medical bills.

Where does that figure come from? According to the New York Times, 5.6 million Americans are paralyzed. That is 1.9 per cent of the population—almost one in fifty. From a California 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, which are of course hard to work with. But we can get a rough idea of the financial nightmare.

Assuming a life span of 70 years, and medical expenses just half a million dollars each, paralysis may cost California $5 billion a year— or $131.57 per Californian.

With such expenses, many paralyzed Californians turn to government for help, programs like MediCal, MediCare: 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 at all. He could not straighten out his arms, and the doctors gave him no hope. 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, giving them crucial preliminary data, the Federal government gave them an additional $84 million in add-on grants—new money for the state.  

With 300 scientists having worked on RR grants, and a modern central laboratory at UC Irvine, the research enhanced biomedicine, already the number two industry in our state.  

Because the spine is central to all neurological disorders, spinal cord research applies to every cause 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.

Most importantly, California’s investment has brought America closer to cure. Our research was featured on TV’s SIXTY MINUTES, the first use of President Bush’s approved stem cell lines. 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.

Help us end paralysis in our lifetime.

Thank you,

Don C. Reed

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