THE BLOG

64 Votes for Paralysis Cure: AB 714 Marches on

06/03/2013 10:36 am ET | Updated Aug 03, 2013
  • Don C. Reed Sponsor, California’s Roman Reed Spinal Cord Injury Research Act of 1999
Getty Images

Wednesday, May 29, late afternoon: I was waiting for the vote on paralysis cure research funding -- a million dollars or nothing for AB 714, by Wieckowski (D-Fremont).

Since 9 a.m. I had been sitting in the California State Assembly gallery, where visitors may overlook the meeting room.

In the distance a painting of Lincoln quietly presided. Crystal chandeliers glistened in soft light. The grandeur even silenced (for a moment) the schoolkids who trooped in, a couple dozen at a time, there for their school trip and a five-minute glimpse of democracy.

And twenty feet below, at their rows of double desks, were the leaders of California.

At the far end was the speaker's platform, currently occupied by Acting Speaker Nora Campos. To her left was a black scoreboard, bearing the names of every Assemblymember -- and beside each name were two buttons, one for red, the other green.

Fifty-four green lights and we won: The paralysis cure bill advanced to the Senate. Fifty-three votes or less, and we lost.

Eighty Assembly members, each with legislative aides -- they had been visited repeatedly by Roman and myself. We did it systematically, dividing up the members, floor by floor. We made our pitches, again and again: AB 714 and the fight against paralysis.

Thousands of emails, faxes, and phone call from members of the disability community had been transmitted.

Our bill was small, but it mattered.

In 1999, the Roman Reed Spinal Cord Injury Research Act had begun. Named after my paralyzed son Roman Reed, the program was highly successful, and been twice renewed, with essentially a unanimous vote -- exactly one person had voted against it.

But when the state budget crashed in 2010, the money (then $1.5 million a year) was removed.

For the past three years, we had been fighting to put it back.

In 2011 we asked for a traffic ticket increase of three dollars each, but that was defeated in the Appropriations Committee.

In 2012 we lowered the ask to just one dollar per ticket -- that approach passed every committee in both Assembly and Senate -- before Governor Brown vetoed it. He did not like the idea of funding programs with penalties, saying such a program should be paid for from the general fund. We agreed, but that money had been taken away. Should paralysis cure research be stopped in the greatest state in the Union?

With one American in fifty currently paralyzed, the fight cannot be forgotten.

This year, to address the governor's concerns, we had thrown out the idea of the traffic ticket increase. Our funding request was two million a year -- from the general fund.

Unfortunately, our request was chopped in half by the Appropriations Committee.

So now we were asking just one million a year from the taxpayers -- which is not a lot for a government program. One legislative aide, a Republican, described the amount as so small it was like "budgetary dust."

But still it was important.

"Roman's Law" provided small grants -- $20,000 to $50,000 -- typically to young scientists. This met a real need. The big grants (from the Federal Government) go to established experts in the field. The average age for a scientist to receive his/her first grant is getting older and older, already 44 years of age. Our act helped the creativity of youth, where many breakthroughs come from.

Amazingly, every dollar the project spent brought in five more. If a scientist succeeded with our small grants, that gave them a track record, making bigger grants much easier. So if they succeeded with a $20,000 grant from our act, and the Federal Government liked what they had done and gave them a million-dollar grant, that money came to California, unexpected revenue.

Over ten years, the $15 million spent had attracted an additional $84 million in add-on grants from National Institutes of Health and other sources -- new money for the state.

I waited, shifting in the hard oak seat, not designed for long-term occupancy.

Assembly Bill 741 (D-Wieckowski) was item number 193 -- almost two hundred bills would be heard before ours.

Each bill was named by speaker Campos. If she added: "the clerk will read", that gentleman would rattle off ten or twelve words fast as he could, rapid-fire but distinct, like an auctioneer -- then the author of the bill would speechify, followed by objections and support.

It might take five minutes, or twenty, for each bill.

Lunchtime came and went. I began to wonder if we would make it to the bill in time.

And then, at 3:44 p.m., I heard the clerk say in a rapid fire rush like an auctioneer, so fast I only caught a few words:

"Wieckowski... Roman Reed... spinal cord injury... votes required, fifty four."

I expected a short silence, typical for each bill read, as the Assemblymembers readied themselves for a change of subject, and new information.

Instead, there was a sudden buzz of talk, quite loud, even some laughter. It was as if they recognized this bill. And whether this was good or bad I could not say.

Bill Author Bob Wieckowski made a friendly but powerful speech, followed by remarks from Assemblymember Travis Williams, also in strong support.

I waited for the opposition to speak, but nobody did; it went quiet on the floor.

"The clerk will call the roll", said Acting Speaker Campos.

We needed 54 yes votes. There were probably 70 assemblymembers in the room.

Green lights flashed, and a running total at the top --

5, 7, 12, 23, 36, 42, 53 --

A pause, we needed one more yes vote --

I blinked. The count changed. Had somebody reversed their vote?

The running tally read -- not 54, but 64 -- and not one red light, not a single vote in opposition!

64-0. The numbers locked and did not change.

"The measure passes," said Acting Speaker Campos.

A Chinese tourist beside me looked puzzled when I burst into tears. I hurriedly controlled myself, pretending to be coughing, and vacated the premises without delay.

Co-authors Bob Wieckowski, Democrat, and Diane Harkey, Republican, had brought the bill to bipartisan success. Not a single Democrat or Republican had voted against it.

AB 714 had advanced to the Senate. The advocates would begin again, visiting offices, and repeating letters, FAXes, and phone calls, to the Senators and Governor Jerry Brown.

We were one step closer to the cure.