THANKSGIVING JOY: the California Stem Cell Program– May Continue!

By Don C. Reed

Across the street from Monster Park, is a place where dreams are born, and nightmares fought.

We’ll go there in a moment, but first…

Today is Thanksgiving. I am thankful for so much : beloved Gloria, wife of 41 years, did NOT have breast cancer; my father Dr. Charles Reed (88) survived a heart attack and is back playing tennis twice a week: son Roman continues to challenge paralysis, doing something every day to advance the cause of cure; daughter Desiree is doing well as a sports attorney, though still far away in Tennessee; grandson Roman Junior is hitting homeruns out of the ballpark, Jason Troy’s Tae Quan Do is a thing of beauty, as is Jackson’s playing of the violin—and our youngest, grand-daughter Katie Sadie Desiree Reed—eighteen months of beaming personality, who can already practically outrun Grampa.

But after that?

My Thanksgiving joy is a statement from Bob Klein:  that he will “ask voters to approve another $3 billion in a bond measure on the 2014 ballot to keep the stem cell program going.”—“State’s stem cell agency seeks more time, money”, Jack Dolan, Los Angeles Times, November 22, 2010

What a blaze of hope, at a time when the enemies of research are coming at us from all sides!

Bob Klein’s term in office (as Chair of the governing committee of the California stem cell program) is coming to an end next month. You would think the man would be glad to smile and wave goodbye and retire to a well-deserved rest from advocacy. But no, he is going to try to make another miracle.

Remember 2003, when he announced his plans to pass a $3 billion stem cell program? The general opinion was: no chance. The state was mired in a deep financial downturn; the opposition was spreading their usual anti-science nonsense; how could one small corner of medical knowledge excite the world?

But it did. After a tremendous effort, an almost-two-year campaign, Proposition 71, the California Stem Cells for Research and Cures Act was voted into life.

California said yes– and the world won.

Let me give you just one example why—but better yet, come and see for yourself.

First, go to the website: www.CIRM.CA.GOV.  Click on “meetings”, get the date of the next one, and find a site that’s closest to you.

The official location is 210 King Street, San Francisco, California, across the street from Monster Park.

It is a small place, easy to miss, wedged in between two massive buildings: but then you see the modest sign, letters in raised metal:  California Institute for Regenerative Medicine.

Push open the double glass doors; turn left, ride the elevator to the third floor– and there you are.

A place where cheerful people fight the most dreaded conditions known to man. There are no hospital beds, no laboratories or test-tubes, but a life and death struggle is going on here none the less.

Think of the most terrifying disease, or devastating disability: conditions so awful that if done to prisoners it would violate the Geneva Convention against torture—loss of body control, eternal pain, or the slow subtraction of the mental self;  at the California stem cell program, if it hurts people, they will take it on.

Every condition they challenge is officially incurable: chronic, meaning the patient will suffer from it until death. Chronic means the doctors cannot heal you; the best they can do is try to ease some symptoms; and the medical costs keep climbing…

These are real-life problems, as down to earth as you can get.

Example: think for a moment about something undignified, which we all have to do several times a day.

No matter how elevated our position in life, king, queen, president, premier: we all need the restroom:  think how miserable life becomes when that process is blocked.

A friend of mine (no one you know) has prostate problems. He got caught short once while driving. He stopped at a gas station and tried to deal with the difficulty in the usual way, but he just could not. Nothing happened.

In agony, he finally had to call Highway Patrol, and they sent an officer– with a catheterization kit.

My friend described it later as one of the most humiliating moments of his life, for a stranger to put on a plastic glove, grasp his anatomy, and shove a plastic tube inside, to let the urine out.

For paralyzed people, catheterization is daily life: 4-6 times a day. Not only is this awkward and time-consuming, (and may require an attendant) but it makes urinary tract infections (UTIs) all but inevitable.

Now. Imagine somebody might have the answer.

November 11th, a few days ago.

I was sitting in the conference room at the CIRM, with Roman beside me, maybe ten or twelve other people—and a lot of folks connected to the meeting via conference phone.

The main purpose of the meeting was to reconsider a grant for a man who hoped to return bladder control to paralyzed people.

This was Dr. Leif Havton of UCLA, and UC Irvine.

Havton was an expert on what I think of as the spinal tail injury. About 20% of all spinal injury involve the tip of the spine, the part you hit if you sit down hard.

A breakage there can bring paralysis, neurological pain, and loss of bladder, bowel and sexual function.

Roman and I knew Leif Havton’s work. Over the past nine years, the small California law named after my son (the Roman Reed Spinal Cord Injury Research Act) had funded Havton seven times: all small grants, but they added up to about half a million dollars.

Now that source of funding was gone.

“Roman’s law” exists (recently made permanent by unanimous vote of the California legislature and Governor Schwarzenegger)—but no money. The state funding was removed for budgetary reasons.  It is agony to see a small but beautiful program go down, after doing so well. “Roman’s law” spent $14 million in California tax dollars—and attracted nearly $60 million in matching grants, new money for the state. Maybe someday we will find a way to fund it again. But for now, it is essentially gone.

But the CIRM still stands.

Building on earlier research successes, Havton applied for a CIRM grant, $1.6 million over three years,  to use embryonic stem cells to patch up the spine and restore bladder control to paralyzed rats.

If it worked, (which of course was the question) it would be important.

Most attempts to heal paralysis are done close to the time when the injury occurs. This is done for good reasons. There may be some measure of natural recovery, which the therapy could enhance; also, the body will actually do damage to itself, releasing chemicals which chew up the spine, sometimes doubling the original wound. Any of that secondary injury that can be prevented is to the good.

But after a few weeks, every new injury becomes permanent–chronic. To defeat chronic paralysis is the ultimate goal; because that is every paralyzed person on the planet, after a couple of weeks for each.

Leif Havton wanted to work with chronically injured rats.

His grant was denied.

The panel of out-of-state reviewers were split on it; some thought it was great, others felt it was too ambitious—and they questioned whether it could be done.

It is an expected part of the scientific process that many grants will be turned down, whether by CIRM, the National Institutes of Health, or any private foundation.  Competition weeds out the weaker grants.

But the CIRM also has a policy called “extraordinary petition” for scientists who feel mistakes or misunderstandings on the part of the reviewers may have caused the rejection of their grants.

Dr. Havton was allowed to call in from Southern California, and make his case. He had a lot to say, and this was his field of expertise.

But he would not go unchallenged.

Sitting in the office with us was Dr. Patricia Olson.

If I was a scientist trying for a grant, I would absolutely want her on my side– and not against me.

Because she can be ferocious. She does not raise her voice, but her intensity level? Wow.

She fights to protect CIRM money as if it was her own. (What is interesting, though, is when she has to make a presentation for both sides of a scientific question: it is like she becomes two people. First she enthusiastically presents the positives; then with equal fervor she gives the other side.)

Olson came at Havton’s proposal like a lawyer in a trial, and he came back just as strong.

Their words were like swords clashing, arguments and counter-arguments, sometimes in scientific terminology which whizzed over my head.

When it was public comment time, Roman and I both spoke. We were in favor of the grant, not only because it seemed like an important piece of the puzzle, but also because we knew the man’s character.

Almost everybody on the ICOC board had something to say. Dr. Oswald Steward could not, because he worked at UC Irvine, where some of the research might take place.

When every side had been exhaustively heard, Melissa King called the roll. One by one their votes were taken. It was close. I was counting on my fingers, yes, yes, no, yes, no—it seemed like we had enough—Yes!

Dr. Leif Havton will be given the first instalment of his three year grant. The rest will come if he meets the  agreed-on milestones—and Dr. Patricia Olson will be looking over his shoulder the whole time.

Afterwards she came over, said she hoped we understood why she presented the negative side.

Roman said, of course! That was her job, and California would be ill-served if she did anything less.

I mumbled something similar.

But it was more than that—she was magnificent. She knew every dollar spent was a dollar less. One project funded meant another would not. By grudging every penny, she fought to make the program work, to only fund the very best: and thereby help to trade the nightmare of disease for the dream of health.

That is the spirit of the CIRM.

Patient advocates and government officials working together, so scientists  can do what no one else can:  using the invisible to do the impossible, the long brutal struggle to cure the incurable, to ease suffering and save lives, to “turn stem cells into cures”—as Roman Reed said—and whose words became the official motto of the California stem cell program.

I never leave that building without a smile on my face, and a renewed respect for the men and women who make it work.

And that’s what I’m thankful for, this Thanksgiving day.

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