Capitol Battle? Paralysis Cure Bill Reaches Health Committee

Blasts of wind shook my little car as I drove onto the bridge over the American River, on the road to Sacramento.

I was going to the state Capitol for a very happy reason: the fight for paralysis cure. For the third year in a row, patient advocates were trying to restore funding to the Roman Reed Spinal Cord Injury Research Act, a small but effective law named after my paralyzed son.

But still it was a funereal drive. The horrific attack on the people of Boston was all over the radio. Just when I thought I had absorbed it, some new agony would bring fresh tears.

How can such cruelty exist?

But as we left the yellow-girder'ed bridge, and entered the tree-lined streets of Sacramento, there was a sight whose beauty never fails: the first glimpse of the Capitol building.

Today, it was spectacular, like a visualization of the battle between good and evil. Behind the building was a mass of gray-brown clouds, like some special effects monster.

But the white dome rose, shining like the spirit of Boston, undefeated: as strangers reached out to help each other on that terrible day, doing what they could to stop the bleeding, offer shelter, and ease the pain...

Much of what patient advocates do is just plain waiting. When a committee meeting is scheduled for 1:30 p.m. (as this one was), your bill may not be heard until much later, if at all: So, you practice your waiting skills.

4:30, the bill was called. AB 714, Wieckowski...

Roman and I zipped up to the witness table. As always, I had a speech prepared for both of us, to use or lose as the situation required.

Wieckowski spoke first, a beautiful short speech, interrupted by the words: "Move to pass the bill", and "Second!"

"Witnesses in support?"

I went first.

"Since its inception in the year 2000, the Roman Reed Spinal Cord Injury Research Act has spent $17.1 million on research. This unique program has attracted $89,045,799 in add-on grants from the National Institutes of Health and other sources: new money for California. Seventeen million attracted an additional eighty-nine million... What other program could make that claim? For every dollar spent on research, we attracted roughly five dollars more: revenue positive all the way. Today we are asking for $2 million a year from the general fund. Could California afford this? Our funding would be approximately five one-hundredths of one per cent of the budget's estimated surplus. ($450 million). California can afford--and must afford--cure research, because the cost of doing nothing is too high.

Suffering, of course, is beyond calculation. But in sheer cold dollars and cents, we cannot afford paralysis. Just one paralyzed person, a quadriplegic like my son, may face $3 to $5 million in lifetime medical expenses. Many have no choice but to go on public assistance. But if we can make an improvement in the condition of a paralyzed person, the financial savings can be amazing. According to Dr. Aileen Anderson, Director of the Christopher and Dana Reeve Foundation Spinal Cord Injury Core Lab, "even a treatment that restored as little as 1-2 levels of...function... could save $1.4 million over the lifetime of one patient." In a small way, I have seen this happen. With major rehabilitation exercises, and the relatively primitive medicines available in 1994, my son recovered the use of his triceps, the muscles on the backs of his arms. This helps him get out of bed in the morning, and lets him drive an adapted van--instead of needing an expensive attendant.

For those who find it strange that a California law should fund medical research, I would refer them to the far larger California Breast Cancer Research Program (http://cbcrp.org/) which since 1993 has spent $230 million "... to find better ways to prevent, treat and cure breast cancer. As breast cancer research bring us closer to cure for all cancers, even so paralysis cure research helps bring many neurological conditions nearer to alleviation.

Because the spine is central to every activity, from taking a breath to using the toilet, spinal cord research benefits many conditions: multiple sclerosis, muscular dystrophy, ALS, spinal muscular atrophy (which kills children, often before the age of two), Alzheimer's, Parkinson's, traumatic brain injury, stroke, and more. And -- "

Roman was nudging me. I continued, but my son is difficult to ignore.

"Dad, wrap it up," he stage-whispered, subtle as a hurricane.

Grumbling internally, I jumped to the last line, asked for the committee's aye vote. They didn't even get to hear my great quote of support from Christopher Reeve, which I always use.

(The man millions thought of as "our Christopher" said, "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 lights our way. We will go forward, and we will prevail.)

Roman talked for only about thirty seconds -- completely ignoring the beautiful speech I had written for him -- why did he not use our allotted time?

"Witnesses in opposition?" Nobody came forward.

"Call the roll, please."

"Aye.

"Aye.

"Aye... "

The final tally was sixteen to two in favor of restoring funding:

Republicans and Democrats alike. We were getting bipartisan support!

We had passed the Health Committee.

The battle ahead will be difficult, of course, especially in the Appropriations committee, where the money arguments will rage.

"I will join the queue," said Assemblymember Wieckowski, referring to the long line of worthy bills, all requesting funds at the next Appropriations Committee Hearing.

The sun was shining as we came out of the building.

Roman laughed about being signaled to by Wieckowski for me to wrap it up, while I was cheerfully oblivious that I was running overtime, not to mention that we appeared to be winning and there was no more need to ramble on.

Spring was on the way.