STEM CELL BATTLES

Before the car crash…

 

Tuesday, I went to Sacramento to fight against Senate Bill 1565, another law which attacks the California stem cell program, in the name of improving it. Wednesday, I went back again to Sac again, … (insert silly rhymes like ”back to Sac”, “sick of Sac” etc.)…

 

Since 2004, supporters of stem cell research have been fighting one attack after another on the California stem cell program. With increasing desperation, those who oppose our effort keep coming up with something new to throw at us, trying to shut us down.  

 

Tuesday was one committee hearing on the bill; Wednesday was a visit to talk to members of the next committee, or rather, the legislative aides of the committee people.

 

I got lost on the drive home. Now it is pretty hard to get lost on a straight drive, staying on one freeway virtually the entire way home, but if anyone can do it, I am the man.

 

The exits did not look familiar.

 

So, naturally, I called up Karen Miner, my stem cell sister in struggle, and mentioned that I was not precisely sure exactly where I was at the moment. Karen is used to me, and pointed out that the operative direction was South, after which we started talking strategy.

 

My cell phone kept fading in and out. I am not entirely unsure we were not better off in the old days when we used to talk through homemade “phones”, i.e.,  a tin can attached to a string. (“Can you hear me?” “Yes, but not on the phone.”)  

 

I was trying to tell her what had happened.

 

This was Wednesday, the second trip to Sacramento in two days. Today, I had talked to the legislative aides of about fifteen members of the next Committee to hear Senate Bill 1565—the last committee hearing at which we could still shut down the bill.

 

The level of knowledge had varied wildly. One aide told me it was his understanding that stem cell research was illegal in California.

 

It is a tough time in the Capitol: budget crisis, everybody rushing around in circles, trying to take care of about fifty bills. I just had one bill to worry about, so it was easier for me.

 

At least the next committee hearing would be in front of a legislator known to be a strong supporter of the California stem cell program. We would get a fair shake.

 

The day before, Tuesday’s hearing, had seemed the opposite.

 

There may be (probably are) completely innocent reasons for what took place.

 

But here is what happened.

 

 Tuesday’s committee hearing about Senate Bill 1565 had been scheduled for nine in the morning. For reasons not entirely clear to me, the meeting began instead at eight.

 

Also, Senator Kuehl had been scheduled to speak in slot number 15, which meant, if I understand correctly, that 14 other bills would be heard before hers.

 

Instead, the Senator went first: instead of speaking around 11:30, she spoke at 8:02.

 

We in the stem cell support community, opposing her bill, had two speakers scheduled.

 

Both were expecting to talk later in the morning, according to the original time.

 

So, when our two speakers came in at 8:30, thinking they would have a couple of hours to wait, the whole thing was already over.

 

Fortunately, Sue North, the California Institute for Regenerative Medicine (CIRM)’s legislative liason person, was there early, as was I.

 

I was pretty much ready to go. Having spoken at four hearings on the bill, plus conversations with perhaps three dozen legislative aides as the bill went through its previous hearings, well, you could wake me up in the middle of the night, and I could tell you more than you wanted to know about SB 1565.

 

Ms.North still had her hands tied by the fact that the ICOC (governing body of our program) had not officially voted a position on the bill. She spoke briefly on technical details.

 

I had my opposition letter with me, which I read pretty much as follows: one short page.

 

“As the father of a paralyzed young man, (Roman Reed, inspiration for California’s Roman Reed Spinal Cord Injury Research Act of 1999*), I am in strong opposition to Senate Bill 1565 (Kuehl, Runner).

 

“According to Senator Kuehl’s office, the purpose of the bill is “to insure the state’s neediest residents benefit from the groundbreaking stem cell research…” It authorizes  the Little Hoover Commission, a conservative organization, to study the governance structure, to “ensure public confidence by…reduce(ing) conflicts of interest.”

 

“First, the program’s governing body, the Independent Citizen’s Oversight Committee (ICOC) already guarantees access to the uninsured. The official analysis of Kuehl and Runner’s bill states: “On March 12, 2008, the ICOC… issued … regulations for grants to for-profit entities to include a requirement that all plans must provide access for uninsured Californians (emphasis added)…similar to the language in SB 1565…” 

 

“Second, the charges of conflicts of interest have already been brought before the California courts, and were dismissed.  The Courts found, in essence, that the ICOC was not a conflict of interest, but rather a convergence of expertise...

 

“Finally, the legislation contains a provision like a poison pill: Senator Runner’s newly-inserted amendment to remove California’s stated preference for embryonic stem cell research. This defies the will of the electorate, and the purpose of Proposition 71.

  

 “The California Institute for Regenerative Medicine (CIRM) is the pride of our state, the envy of a nation, and the hope of a suffering world.  It deserves better than this.”

 

That hearing was Tuesday. Today was Wednesday, and I was on the road toward home….

 

Karen’s voice came in and out on the cell phone.

 

“…need to… CIRM… accomplishments…Prop… 71…

 

Then, clear as a bell.

 

“We need a one-page summary on the accomplishments of Proposition 71. Patient advocates want to know,what has been done?”

 

Oh. Good point.

 

Sometimes it seems like all we do is fight, one legislative battle after another.

 

But what have we won, for all this political involvement and seemingly endless hassle?

 

Two hours later.

 

I was almost home.

 

Leaving the freeway, I took the Mission Street exit, coming over the top of a hill, down around the bend-- a little too close to freeway speed--

 

A car was stopped in front of me.

 

Screech of brakes, liquid-sliding sensation, skidding….

 

WUNK of impact.

 

I got out of my car, all apologies, completely my fault, I am so sorry, etc.

 

A middle-aged woman gets out of her car, shaking her head.

 

“Calm down, calm down,” she said to me, as we both surveyed the wreckage .

 

Only, there wasn’t any. My car looked the same; hers looked brand new.

 

“I don’t see any damage,” I said.

 

 “No harm done,” she said.

 

And then she said something which seemed surreal, like out of Alice in Wonderland.

 

“I am going to give you a hug,” said the nice lady whose car I had just rear-ended, “You are too stressed out.” 

 

And she did. She gave me a hug.

 

Then I went home.

 

Now, the one-pager Karen asked for.

 

The first part was not too difficult. I had to type in www.cirm.ca.gov in the search bar. Then I had to go click. I could do that. Okay.

 

 

 

        Now, let’s see… oh, that looks interesting..FAQ2005 Archives

CIRM Quick Links

 Approved CIRM Grants as of May 2008

As the largest funding organization for embryonic stem cell research in the world, the CIRM has to date committed more than $530 million to 23 California non-profit and academic institutions. 

(Wow, $530 million? We have reached the half-billion buck mark already? Dang, that’s sweet. I remember having a huge knockdown dragout battle for a lousy hundred thousand dollars for one of the original Senator Ortiz bills, and now here we are—$530 million dollars committed funding?)

Specifically:

·                      $37.5 million to train 169 pre-doctoral, post-doctoral and clinical fellows at 16 non-profit and academic research institutions.

·                      $46 million to fund 73 Leon J. Thal SEED Grants to bring new ideas and new investigators into the field of human embryonic stem cell (hESC) research.

·                      $72 million for 28 Comprehensive Research Grants to support mature, ongoing studies on human embryonic stem cells (hESCs) by scientists with a record of accomplishment in the field.

·                      $50 million for 17 Shared Research Laboratory Grants (including 6 Stem Cell Techniques Courses) to fund for the design and renovation of laboratory space, equipment for the new research facilities, and operating expenses for three years.

·                      $54 million for 22 New Faculty Awards to encourage and support the next generation of clinical and scientific leaders in stem cell research.

$271 million to 12 institutions for the construction stem cell research facilities. 

That’s cool, I can put all that (half a billion bucks!) on one page—

 

--but then I went back to the site (www.cirm.ca.gov) again, and noticed the “What’s new?” section…

 

Now bear in mind, this is just what happened so far this month.

 

 

And if you clicked on each one of those, of course, there was a whole lot more information and accomplishments.

 

The only way I could put the CIRM’s accomplishments on one page is if I was one of those people who can write the Bible on the head of a pin. (No, I am not making that up!  Do a Google search on three words:  Bible, head, pin:  and you will see what I mean.

 

I can’t put the accomplishments of the California Institutes for Regenerative Medicine on one page.

 

 But the reality is, we are winning big time right now, and the world is beginning to change for the better.  New jobs have been created, with many more to follow.  New therapies and cures are closer than many imagined, with several clinical trials on the horizon.  California is fast becoming the stem cell capitol of the world.

 

We just have to protect what we won-- which is why we have to defeat bills like California’s SB 1565…

 

P.S. That was Tuesday and Wednesday. Thursday was day one of the ICOC’s latest public meeting, starting at 4:30 in the afternoon. It was scheduled to go to 9:30 at night, but I left at 7:00, being about to be dragged kicking and screaming off to Disneyland.

 

It is Friday morning, 2:30 AM, and Gloria asked to be waked up at 3:00, so we can leave the house at four to be at the airport in time for the plane which leaves at six, so we can take the grandsons (all three of them, Jackson, Jason, and Roman part two) to the new Toy Story exhibit in Disneyland.

 

Grumble, grumble.

 

So if you see me in the next couple days and I am muttering about Buzz Lightyear and evil Emperor Zurg and getting zapped by ray guns and climbed on by three year olds, that’s why.