Archive for June, 2012

THE AGONY AND THE EXHAUSTION: the Price of Political Change?

By Don C. Reed

THE AGONY AND THE ECSTASY, by Irving Wallace, describes the creative process of Michaelangelo, as he painted the Sistine Chapel. Put a small change in the last word, making it “exhaustion”, and you have a pretty good description of politics as well.

Tuesday, June 26th. Everybody in the California Capitol was running on fumes, or so it seemed,   in the halls outside Conference Room 4203.

Inside that room, nine people would decide the fate HB 1657, a way to fund the Roman Reed Spinal Cord Injury research Act, named after my paralyzed son.  If that bill (AB 1657) became law, it would impose a $1 add-on penalty to traffic tickets, raising approximately  $3 million a year for the fight against paralysis.

Our bill had just passed the Assembly already.  We now needed this committee, (Transportation and Housing), then Appropriations, then the full body of the Senate—and if the Governor signed it, the research would go forward—and my son would have a chance to walk again.

Right now, Roman was working his cell phone furiously, asking friends for one more phone call, one more e-mail to the members of the committee, especially Mark DeSaulnier, the Chairman.

I was running up and down the stairs between the floors of the Sacramento Capitol building—no time to wait for elevators—taking last minute messages to the offices of the committee members.

We needed five ”aye” votes. Five out of nine.

At last, there were no more errands to run; no way to influence the situation, but only just to sit and wait for our turn at the witness stand.

I took an aisle seat in the conference room, waiting for Roman to pull in beside me.

At three o’clock, Assemblyman Wieckowski approached the podium, adjusted the mike.

“Hi,Don!” whispered a voice behind me.  It was Angela Gilliard of the University of California, here in support!

I heard the click and hummm of a power chair.  As we three headed for the witness area, I passed Roman a copy of the speech I had written for him.

Roman placed the speech on the table in front of him, looked at it for a moment—and then shoved it away.

“I don’t need to read it—I live it,” he said. Which was effective, I supposed, except that I now had to squeeze some of his planned remarks into my already crowded three minute speaking time…But Roman is a force of nature, and knows what he is doing.

He covered the emotional aspects.  I listed the nuts-and-bolts. Angela Gilliard explained how every dollar California spent had attracted four dollars from the federal government, giving us an actual profit, quadruple the bang for the buck. Fourteen million over ten years had brought in sixty-four million from the National Institutes of Health and other sources, new money for the state…

The Chair thanked us for our testimony—but there were not enough members present for the vote.

So…we waited some more.

I sat there twitching from too much coffee, planning what to say if we lost.

The program was great—no one disagreed.  Well, except maybe the California Catholic Conference, which called part of our research “immoral”.  We had funded embryonic stem cell research (4 projects out of 129) early on.  I was proud of the research and most Catholic families (like my own) supported it.

Our original $1.5 million a year had come from the general fund: paid for by the California taxpayer. But now, thanks to the Republican no-new-taxes pledge, there was not enough money in the budget. 

Why was it so hard for California to raise taxes on the rich?  People called Democrats the “tax-and-spend” party.  I never understood why this was an insult.  Of course we should tax and of course we should spend, fighting  problems too big for families on their own–what was wrong with that?  Why do rich people object to taxes they can so easily afford? They became rich off our state and nation—why would they not want to help—were they not patriotic?

We had been forced to come up with alternative funding. 

Traffic ticket add-ons were a natural: unsafe driving may cause car crash, a major source of spinal cord injury.  

Of course, we did not enjoy slapping an extra dollar onto already expensive traffic tickets.  But what choice did we have?

Should we sit by and do nothing while the program died?

I help my son get out of bed in the morning. That is okay for now, but I am 66 years old.  What happens when my strength fails?

We just had to win. No fallback position. If we failed this year, we would come back again and again until they get tired of telling us no.

“They have a quorum”, and Jeff Barbosa, “enough members for a deciding vote.”

But was it enough to win?

One by one the votes were tallied. The “ayes” on our side: Mark DeSaulnier, Alan Lowenthal, Joe Smitian—and Wyland, Mark Wyland, a Republican– thank you Sir!

But it only tallied to four aye votes, 4-2. The no votes came from Ted Gaines and Tom Harman, both Republicans.

Democratic members Christine Kehoe and Fran Pavley did not vote, I don’t know why.  I felt a chill up my spine.  Senator Kehoe was the Chair of the Appropriations Committee where we must go next, if we passed today.

And then at last Senator Marco Rubio came in, sitting down very casually, as if he did not hold our future in his hand: the lady in charge asked his vote, and he smiled and said “aye” and we had our fifth vote…

As I walked down 12th street afterwards, trying to remember where the parking lot was, I called Gloria.  She asked if I was excited; I said no, too tired.  How did Sacramento people handle this, I wondered. I just had the one bill, and my brain felt fricasseed—how did legislators keep track of a couple hundred bills—especially when there was not enough money to go around?

My answer was ice cream (technically mocha almond fudge gelato, an Italian delight with absolutely no calories whatsoever) to eat on the way home.

I got the biggest one they had, but I should have gotten two.

Because our bill was still alive.


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FIVE TO STAY ALIVE: Paralysis Cure Bill Faces Key Committee Vote

by Don C. Reed

 AB 1657: $1 TRAFFIC TICKET ADD-ON May Fund Roman Reed Spinal Cord Injury Research Act

This Tuesday, a vote will be held in Sacramento: to allow the Roman Reed Spinal Cord Injury Research Act to go forward, or not.

So near, and yet so far… 9 members of the Transportation and Housing committee voting, and we need 5 to stay alive. What if one person is in a bad mood that day? It is so easy to say no.

I am the dad of Roman Reed, the paralyzed young man who inspired California’s Roman Reed Spinal Cord Injury Research Act of 1999. The program was highly respected and successful— twice renewed by unanimous vote of Assembly and Senate–until its’ funding was eliminated.

Now, we are fighting to put that funding back.

Assembly Bill 1657 is a traffic ticket add-on of $1 to restore that funding. AB 1657 passed the Assembly, and will now be heard by the Senate Transportation and Housing Committee, June 26th.

Why traffic tickets? Car crash is a major cause of spinal cord injury.

Why single out spinal cord injury research for funding?

Most injuries heal. Spinal cord injuries never do. Paralysis is the most devastating insult the body can receive—it affects 5.6 million Americans– and it is forever, until you die.  

Studying spinal cord injury may benefit many other conditions: not only paralysis, but also multiple sclerosis, muscular dystrophy, ALS Lou Gehrig’s disease, spinal muscular atrophy (which kills children, often before the age of two), Parkinson’s disease, traumatic brain injury, and more. These conditions devastate our loved ones, and our economy; a quadriplegic like my son may face lifetime medical costs of three to five million dollars…

But traffic ticket add-ons are already high, and may be unfair to low-income drivers?

These concerns are legitimate, and we have altered our bill to address them. Last year we requested $3 per moving violation, which was turned down by Assembly Appropriations.  This year we lowered the amount requested by 2/3, asking only one ($1) dollar per ticket, the smallest increase allowed by law. We follow a precedent set by seven other states– Florida, Illinois, Kentucky, Missouri, New Jersey, New York, South Carolina and possibly an eighth state, Alabama, where a program imitating the Roman Reed Act just passed their State Senate.  All these states use traffic fines to fund spinal cord injury research, but with higher add-on penalties than ours, as much as $100 per ticket—while our bill asks only one dollar: pennies for paralysis.

Administered by the University of California, the Roman Reed Core Laboratory at UC Irvine has become one of the key spinal cord injury (SCI) research institutions in America.  

Small but mighty, “Roman’s Law” has achieved 175 published scientific papers, each a piece of the puzzle of cure.  Two patents are pending, one a new form of Petri dish, modernized to sort cells cheaply.  Our breakthroughs range from practical to amazing: from cost-saving new methods of rehabilitation using robotics, to an electronic “bridge” to surpass the wound injury scar, to a way to reduce the injury itself by modifying the body’s immune reaction.

Amazingly, the Roman Reed Act is revenue-positive, bringing in more money than was invested. In its ten year history, our program spent roughly $14 million California taxpayer dollars—but it attracted an additional  $64 million in matching grants from outside sources like the National Institutes of Health—new money for the state.  

AB 1657 is endorsed by Lt. Governor Gavin Newsom, the University of California (UC) system, Art Torres (California State Senator, ret), Bob Klein (author of the California stem cell program), Bill Monning, Gil Cedillo, Tom Ammiano, Jerry HillHolly Mitchell, V. Manuel PerezNancy Skinner, Mike Davis, the California Healthcare Institute (CHI), Hans Keirstead (his project achieved the world’s first embryonic stem cell research human trials) Shinya Yamanaka (who invented a substitute for embryonic stem cells), Nobel Laureate Paul Berg (Nobel Prize-winner for DNA research), Sherry Lansing (former President, Paramount Pictures), former state controller Steve Westly, Leeza Gibbons (Board Member California stem cell research program, former host Entertainment Tonight), Brock Reeve (Christopher’s brother and director of Harvard Stem Cell Institute), Jeanne F. Loring (Director, Center for Regenerative Medicine at Scripps Research Institute) , Mary Vassar, Executive Director UCSF, San Francisco General Hospital Brain and Spinal Injury Center) and many more.

In Southern California, visit the Roman Reed Laboratory at UC Irvine. Or check out our website (http://www.reeve.uci.edu/Research/RomanReed.aspx  and download our 58-page report.  

Please help us pass AB 1657, a legislative legacy: down-to-earth practical research for cure.

Send a one-sentence email to one or more of the Senators listed below. If you only have time for one, please contact the Chairperson.

Your letter could be as short as: “I support AB 1657, a way to fund the Roman Reed Spinal Cord Injury Research Act”—that would be so helpful. More is nice, of course, but is up to you. Time is short, unfortunately, and your support in any amount would mean so much.

It is a tough fight, of course—passing a bill nowadays is an uphill battle—but it is nothing compared to the struggle every paralyzed person faces every day.

We will fight on. And if we never give up, we can only win or die. And everybody dies—

So why not try?

Senate Transportation and Housing Committee, 1:30 p.m., June 26, Room 4203

Chair, Sen. Mark DeSaulnier (D-Concord) Room 5035




Sen. Christine Kehoe (D-San Diego)  Room 5050




Sen. Alan Lowenthal (D-Long Beach) Room 2032




Sen. Fran Pavley (D-Agoura Hills) Room 4035




Sen. Michael J. Rubio (D- Bakersfield) Room 2066




Sen. Joe Simitian (D-Palo Alto) Room 2080




Republicans on the Committee

Sen. Ted Gaines (R-Fair Oaks) Room 3056




Sen. Tom Harman (R-Huntington Beach) Room 5094




Sen. Mark Wyland (R-Escondido) Room 4048




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North Dakota Senate Races, and the Sinking of the Titanic

by diverdonreedUnfollow


Cooperation or Obstruction?  California Counts Votes on Paralysis Cure  

By Don C. Reed

What could be better than bipartisan cooperation, Democrats and Republicans working together for the common good—does not the eagle need two wings to fly?

Sadly, today’s Republican leader appears to think otherwise:  opposing all things Democrat. The “new and improved” GOP seems barely willing to stand with Dems for the Pledge of Allegiance.  I can almost hear Tea Party-ites grumble, “We don’t support Big Government!”

There are honorable exceptions, of course. In California we will miss David Dreier, a moderate Republican who championed embryonic stem cell research. I honor his service and wish him well. But he is retiring now. And of course Arnold Schwarzenegger fought hard for environmental protections, as well as stem cell research.

But it cannot be denied that the Republican party has changed, and not for the better. Even on matters where once they agreed with Democrats, they now seem compelled to oppose.

Example: paralysis research once seemed an issue on which everyone agreed. In 2004 and 2009, every Democrat and almost every Republican (all but one) in the California Assembly and Senate voted to renew the Roman Reed Spinal Cord Injury Research Act of 1999.

But with budget problems, the program named after my son was approved—but without money.

Naturally we had to find a way to fund it.

Since most Republicans take a “no new taxes” pledge, (and every new tax needs a 2/3 majority, thanks to Proposition 13) there was no help from the general fund.

So, in 2011, Assemblymember Mike Wiechowski (D-Fremont) led an effort to fund the research by a $3 traffic ticket increase, car crash being a major cause of paralysis. The bill passed two committee hearings before being shot down in Appropriations.

In 2012, we tried again, Assembly Bill 1657, for just a smaller increase. Once more, we passed the Public Safety Committee and the Health committee—and faced a tough struggle in Appropriations. Traffic tickets cost a lot already, and some people cannot afford to pay them. These are reasonable objections.

But what other choice did we have, except to let the research die?

Committee Chair Felipe Fuentes had previously opposed this method of funding. But he weighed the benefits against the negatives, and said:

“Let it go through for just the one dollar.”

This act of leadership and vision may turn out to be the most significant boost medical research has had in years. I have been following paralysis cure attempts since my son’s accident in 1994, and the science is finally coming together, coalescing around a practical cure– but only if we can locate the funds.

AB 1657 passed Appropriations on a 12-5 vote.  Democrats said yes; Republicans said no.  

Now, on the main floor of the Assembly, we faced a larger vote.

It was early morning. From where I sat in the free skybox section reserved for citizens to watch their government in action, I could look over the railing, to see a floor full of action.  

Every member had a desk, computer, and two buttons to press, one for yes and one for no: life or death for bills like ours.

On the wall were two large black electronic scoreboards, double rows of the members’ names, and beside each one two dots, connected to those magic buttons: one for yes, and one for no…

At 10:00 the hearing began. Assembly Speaker Pro Tempore Fiona Ma gaveled the meeting into order; we stood for the Pledge of Allegiance, especially meaningful in the center of government.

When we sat down, the fighting began.

One by one each bill was presented, briefly argued, and then the vote. Buttons were pressed: red dots lit up.

41 “Yes” votes meant the bill passed; 40 or less meant come back next year.

Hours passed. Lunchtime came and went. I dozed…

Suddenly I heard our bill numbers! AB 1657… I sat up straight.

Assemblyman Wieckowski spoke briefly—no one spoke in opposition– and Speaker Ma repeated the words: “all vote who desire to vote…all vote who desire to vote…”

The red-dot numbers began to light: changing, and climbing.

35 yes, and 19 no: it was not enough to win.

Roman and I rushed to the elevator, flew to Assemblymember Wieckowski’s office—“Just not enough people back from their lunch,” said legislative director Jeff Barbosa, fingers flying on the computer keyboard, rallying friends of the bill. “The vote will be re-taken at the end of the day,” he said.

We went back and sat some more, watching the drama of other people’s bills.

And then at last, at 5:33 in the afternoon, AB 1657 was raised once more—I held my breath,   the numbers climbed.

46 in favor, 24 opposed: votes below.

We had won the Assembly. Now we must persuade the Senate, and then Governor Brown. If we succeed, Roman may one day fulfill Christopher Reeve’s great dream and “walk away from (his) wheelchair forever.” When he does, he will not walk alone; millions will follow.

But I felt a wave of sadness. We had won– on a pure party line vote.

Every Democrat who voted (46) was for it.

Every Republican who voted (24) was against it.

More than Five million Americans* suffer the quiet agonies of paralysis, our families face crushing medical bills—and partisan politics may block the cure.


Remember in November.

Letters of support for AB 1657 are urgently requested: send to:  jeff.barbosa@asm.ca.gov

Voting Yes – 46—all Democrats

Alejo, Allen, Atkins, Beall, Block, Blumenfield, Bradford, Brownley, Buchanan, Butler, Campos, Carter, Cedillo, Charles Calderon, Chesbro, Davis, Dickinson, Eng, Feuer, Fong, Fuentes, Galgiani, Gatto, Hall, Hayashi, Hill, Huber, Hueso, Huffman, Lowenthal, John A. Pérez, Lara, Ma, Mitchell, Pan, Perea, Portantino, Roger Hernández, Skinner, Solorio, Swanson, Torres, V. Manuel Pérez, Wieckowski, Williams, Yamada

Voting No – 24—all Republicans

Achadjian, Beth Gaines, Bill Berryhill, Conway, Cook, Donnelly, Garrick, Gorell, Grove, Hagman, Halderman, Harkey, Jeffries, Jones, Knight, Logue, Miller, Morrell, Nestande, Nielsen, Olsen, Silva, Smyth, Wagner

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