THE BLOG

'With You Shield, or On It': Why Cure Research Must Be Supported

08/07/2013 05:11 pm ET | Updated Oct 04, 2013

Remember what Spartan mothers told their sons before they went off to war?

"Return with your shield, or on it."

To me, that advice fits the budget battles for medical research funding, whether local or national.

If people are dying of incurable disease, (which they are), and research is the only hope for cure (which it is), than the struggle can be summed up in three short words:

Win, or die.

Where this gets up close and personal for me is the battle against paralysis.

My paralyzed son inspired California's Roman Reed Spinal Cord Injury Research Act (RR Act), which funded scientists from 2000-2010, $1.5 million a year.

In 2010, state money was short, and the funding was removed. We have been trying ever since to put it back.

Assembly Bill 714 (Wieckowski, D-Fremont) asks that one million a year from the General Fund be dedicated to the RR Act. AB 714 has gained strong bipartisan support, passing the Assembly, 68-3, and the Senate Health committee, 9-0.

Now we must face the Senate Appropriations Committee (August 12th), followed by the full vote of the Senate, after which we hope the Governor will sign the bill.

Last Tuesday I had the privilege of meeting with Donna Campbell, Deputy Secretary of Health, in Sacramento.

For a solid hour I was allowed to make the case that California would benefit by investing one million dollars a year into paralysis cure research.

The problem is huge. Roughly 5.5 million Americans are paralyzed today, roughly one in fifty citizens.

Financial ruin is an ever-present threat. Lifetime medical expenses for a paralytic can reach three to five million, forcing many onto government relief.

Some endure endless pain, like having one's skin sandpapered off, and gasoline poured on. Many need assistance with the smallest acts of daily life; using the restroom may take two hours and require help.

On the positive side, paralysis research benefits many disorders: traumatic brain injury, stroke, Alzheimer's, Lou Gehrig's disease, Parkinson's, multiple sclerosis, spina bifida, muscular dystrophy, Spinal Muscular Atrophy (SMA), and more.

How does the program work? California scientists apply for small grants from the Roman Reed program. Succeeding with those makes obtaining larger grants much easier.

Example: Dr. Ray de Leon received a Roman Reed grant of $74,000 to study robotics for paralysis rehabilitation. The National Institutes of Health gave him an add-on grant of $1.3 million... (see appendix 6 in our 58-page document).

For a ten-year expenditure of $15 million, the program attracted an additional $83.9 million from outside sources: new money and jobs for the state.

The meeting seemed to go well. Deputy Campbell was already fully informed about the program, and she asked in-depth perceptive questions; her secretary took careful notes. And Deputy Campbell is the person who will be discussing AB 714 with Secretary of Health Diana Dooley, health adviser to Governor Brown.

After the meeting, I walked to the Capitol building, to visit the offices of the Senate Appropriations Committee members, seven Senators who hear the bill next.

But when I stepped out of the elevator on the fourth floor, something was different.

Usually the halls are jammed with humanity: chattering civilians, schoolkids and lobbyists, everybody talking at once: a cheerful chaos.

Today, it was silent. The hallway was empty. I could see buffer marks on the gleaming immaculate floor.

Then I remembered. This was the break between sessions, and the legislators were not there. Many have apartments in Sacramento, and only get to see their families on the weekends. Between sessions they rush home, and spend time with their children and grandchildren, and re-connect with constituents.

But behind the closed doors, democracy pulsed. Legislative aides and staff were hard at work. These unsung heroes keep their leaders up to date on hundreds of complicated bills, as well as making phone calls, typing emails, filling out forms and setting up meetings--the chores that make government work.

Though we are always glad to speak with a legislator, those meetings are few. It is to the aides we advocates turn.

And it always begins with something like the following:

"Hi, I'm with AB 714, the Wieckowski bill? It goes to Appropriations on the 12th; is there somebody I could talk to?"

If the health-issues aide was available, we talked. If not, I left materials: our 58-page booklet, a 3-page overview letter, and of course a contact card.

Nowhere did I feel unwelcome. AB 714 seems to be a bill everybody can support: Republicans and Democrats alike. Everyone has a family they love; we all face the fear of crippling disease or injury: cure research should be above politics.

Three hours later, I was on the freeway, heading home.

Next week Roman will make the same trip to the Capitol.

Roman's driving motivation is a little girl named Gwendolyn Strong, age four. She has a form of progressive paralysis called Spinal Muscular Atrophy (SMA); a terrible condition. Right now she can only move her eyes. Wherever Roman speaks, he always mentions Gwendolyn, and her parents Bill and Victoria, dedicated to defeating SMA.

Their latest effort is an astonishing fundraiser, an 11 mile surfboard paddling challenge done by children, to raise funds to fight the disease.

My motivation is my son. When he was first paralyzed, a doctor told me Roman would never walk again, never close his fingers, and that I would most likely outlive him. The stress of paralysis is too much for the body, and it often wears out prematurely.

If the program dies, it also kills my best hope of seeing Roman walk again. That is why I understand what the Spartan mothers said: and why we must keep trying.

So long as breath prevails, that long the fight goes on.

If you want to help, send an email today to: Darrell.Steinberg@SEN.CA.GOV. This is the President Pro Tem of the Senate, as well as Chair of Appropriations. His recommendation carries enormous weight.

Just one short sentence is all I ask: tell him you support Assembly Bill 714 (Wieckowski, D-Fremont) to dedicate one million dollars a year to the Roman Reed Spinal Cord Injury Research Act.

Help us defeat paralysis in our lifetime.