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STEM CELL BATTLES
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Hi, Folks! I had a deadline to meet, to get a large piece together for Bernie Siegel's latest stem cell extravaganza, (Remember this September-- Wisconsin's Lab on the Lake (See previous column LAB ON THE LAKE: The World Stem Cell Summit…) Thought you might like to see how it turned out.
HOW TO PASS A STEM CELL LAW By Don C. Reed
Since that terrible day, Roman has continued on, vigorously, with his life. He graduated from the University of California, got married, became the father of two fine young sons, and is the commissioner for health and recreation in his home town of Fremont. He is still paralyzed.
But now, for the first time in history, it may be possible to alleviate that condition—if we can remove the political barriers to medical research, and fund the scientists.
It is not enough for giants like Jamie Thompson of Wisconsin and Ariff Bongso of Singapore to pioneer the field of human embryonic stem cell research. Their work and that of hundreds of thousands more scientists must be supported, and their rights to research be fully protected.
That’s where you and I come in. We may not be the scientists ourselves, but we can make sure they have what they need.
Beginning with a law named after my son, the Roman Reed Spinal Cord Injury Research Act, I helped pass five stem cell research laws in California, as well as working to defeat several negative legislations. It has also been my privilege to participate in various national and international efforts to protect scientists and increase funding.
Are you interested in developing a stem cell law for your state?
If so, drop me a line at stemcellbattles@aol.com. If I can help you, I will.
In the meantime, here are a few tips which might be useful.
Choose your champion.
If you are going to pass a law, you need a leader. I worked with three of the best.
Assemblyman John Dutra of Fremont, California, was gentle, kind, soft-spoken-- and utterly indomitable. He authored the bill named after my son, the Roman Reed Spinal Cord Injury Research Act of 1999 which was almost defeated on several occasions. When our funding source was cut off, or when the energy crisis shut us down, John Dutra would just shake his head and say, “Passing the Roman Reed Act is my number one priority.” Because he would not quit, California became the first state to fund embryonic stem cell research in America.
Senator Deborah Ortiz led the fight early on for vital “permission laws”: establishing the legality of both embryonic stem cell and Somatic Cell Nuclear Transfer (SCNT) research in California, as well as beginning a registry to keep track of our state’s stem cell lines, and setting up a committee to study and keep track of the effort.
Robert N. Klein… the author of Proposition 71, is a man whose contribution is too large to fully grasp: three billion dollars, primarily for embryonic stem cell research? No other program in the world comes even close to that. Where did it begin? Our core budget for the campaign to pass the Initiative was $3.1 million dollars-- Bob Klein’s life savings. And the campaign was only the beginning. Even after California voted yes, the program had to be defended and developed every step of the way, and that battle still goes on.
If you want to pass a law in your state, you need somebody tough, knowledgeable, and caring. How do you find them? Start in your own back yard. Contact your assembly person, (hard copy letter, in which you specifically ask for a reply) and ask if they will lead an effort to pass a stem cell law.
You may get a phone call like I got at my place of work, our local junior high school.
“Would you mind if we called it the Roman Reed Spinal Cord Injury Research Act?” said the voice on the phone.
In the bliss of ignorance, I thought that was all there was to it, and the bill would sort of happen on its own.
HELP WITH THE CHORES
The legislator will draw up the bill.
Passing it is up to us, the advocates.
Outreach is how we win, building support within the district, and across the state. That means emails, snail mail, and phone calls, finding friends and working with them, as your bill works its way through the various committees (if a legislator-driven bill), or gathering signatures and working to get on the ballot, if it is an initiative.
Suppose the next committee is the Health Committee, and there are 17 people on that committee. Each one has to contacted, and educated. Visits to the State Capitol are helpful, because you can talk directly with the legislative aides.
The best messages these committee members can receive are from their own constituents. Your friends, their friends, and friends of friends, working together, are almost unstoppable.
Example: the funding mechanism for Roman’s law was originally going to be a $15 add-on to traffic tickets, an idea we stole from the great Paul Richter of New York, the patrolman who was shot in the spine, but turned his tragedy into a triumph of inspiration, but fighting for research.
Unfortunately, the American Automobile Association (AAA, triple A) was against that. I went to visit their lobbyist, and she said they did not want their drivers messed with. I said we are only bothering the bad drivers, but their position was “oppose”.
So, our little group of wheelchair drivers and friends organized a letter writing campaign to that one individual, the AAA lobbyist.
It happened that she had to be gone from her office for a week.
When she returned, so many letters were pushed through the letter opening, that she had difficulty opening the door—and the AAA changed their position from oppose to neutral.
Most state laws are guided by legislators, but the chores are done at patient advocate homes—or at school, where student clubs become involved in democracy.
For Proposition 71, the California Stem Cells for Research and Cures Act, we had an actual headquarters, three rooms on the Klein Financial Enterprise office.
But the chores were still very down to earth. The first day I worked on Prop 71, I cut up cardboard boxes all morning, going home with a waterblister on my thumb. Why? The cut up cardboard became backing for signature-gatherers, like a portable desk to write on—for our folks standing outside grocery stores, trying to get signatures.
California required 550,000 signatures to qualify for the ballot; we got 1.2 million.
Any accomplished chore is another step closer to victory.
DON’T DEBATE
As a place to learn, a debate is not productive, because every point one side makes, the opposition will attack, while the audience cheers for whichever side they came to support. To share your message, stick to presentations, and carefully stay on message.
On the street, individual debates are a waste of your time and energy. Who are the people most likely to argue with you? Folks who have their minds made up, and they just want to shoot you down.
Example: When I first began signature gathering, I would start conversations and try to convince people to sign. We would go over all the various issues of stem cell research, pro and con, and maybe they would say yes, or maybe no—and it could take ten minutes to get one signature, while dozens of other prospects walked by.
Fortunately, one day I got to watch a professional signature gatherer in action.
His whole message was six words.
“Support stem cell research?” he said. If they answered yes, he said, “Sign here”, and pushed the clipboard into their hands.
If they said no, he went to the next person. He never argued.
If you are making a presentation, and someone verbally attacks you, deal with him/her/it firmly, briefly—and then move on. If you do not have an answer, say:
“I can see we don’t agree, and you are entitled to your opinion. Next question?”
Don’t debate.
TAILOR ANSWERS TO YOUR AUDIENCE
You are your bill’s best advertisement. Wherever you go, there are people who want and need to hear your message. We are fighting for cures to chronic illness, and everybody has a loved one suffering.
You can say, “Almost everyone knows somebody with an incurable disease, like cancer, Alzheimer’s, paralysis…” When they nod their head, pause, give them a chance to say who it is, maybe a sister with diabetes, or whatever it is. Then you say, “That’s why we’re doing this, because every family has a loved one at risk, and we want the best treatment for them.
Also, if you know the reason for their caution…
For instance, the term “Religious Conservative” is a pretty good description of my family. We had a big family reunion, and everybody knew I was involved in embryonic stem cell research, and several had gently suggested that I was going to go to Hell for it.
So—I talked about it, and they looked at each other, and I knew I was getting nowhere—until I quoted a verse from scriptures.
“The blood is the life”, I said, “Leviticus 17:14.” No blood, no life. I went on, these are cells, cells, nothing but cells—but the quote was what did it.
That was the end of the argument. I did see somebody thumbing through their Bible later, just to see if I was lying, but that single quote meant more to them than all the science in the world, because that was their frame of reference.
PERSONALIZE EVERYTHING.
If you say, spinal cord injury, people say what? If you say, Christopher Reeve, Superman, paralyzed movie star, our champion for the hope of cure, then people nod: you have their attention.
People are motivated by people.
When you say one hundred million Americans have a chronic disease or disability, that’s too big. Say it, to make clear the size of the problem, but immediately follow with something like: these are not statistics, these are our loved ones, members of your family and mine.
STAY ON MESSAGE
Your campaign will have key points, short clear statements that elucidate the issue: like, “stem cell research and therapies may ease suffering, and save lives.”
Prop 71 had a single sheet of such message points, which we carried around and studied constantly. Everything we said during the campaign was filtered through that.
When you have your press conferences, anticipate the questions as best you can, and have your answers ready, and do not let yourself be driven off those answers, even if they ask you the same question several times.
Example: After the tragedy of Christopher Reeve’s untimely death, a news organization opposed to the research asked me a “trap” question.
Three times, they asked me: did I not think it was a good thing that Christopher Reeve had died, because it would rally the troops! (Well, it was Fox News!)
But I went there knowing what I was going to say. Three times I gave the same answer.
Our champion had fallen, but the flame of his faith still lights our way. California has taken up that torch. We will “go forward” and we will prevail.
EXPECT OCCASIONAL CRAZINESS
If you look up your favorite disease, and follow the pathway toward cure, there is almost always resistance from the confused or obstinate—for example, x-rays were opposed because it was thought they might be used to see through women’s clothing!
Or like the little old lady who approached me on a street corner, where I was gathering signatures.
I had a cardtable with a sign, “Get Stem Cells on the Ballot”, and she and (presumably) her husband walked up, listened for a moment--
And then she spit on me.
As if in slow motion, the white foam flew through the air, and landed on my shoe.
I had always wondered, what would it be like, to see the naked face of hate?
But all I felt was, well, she is a little bit crazy.
She nodded, having delivered her message. Her husband steered her away.
The spit dried on my shoe.
And I went on gathering my signatures.
LOCATE CONSERVATIVE ALLIES
We must not let the struggle be defined as a purely liberal vs. conservative, science vs. religion situation: we want the faith and business communities on our side.
One great place to make such friends is business group lunches. Organizations like Rotary clubs and Kiwanis are full of intelligent leaders: people I think of as reachable conservatives. They are fully aware that biomedicine has vast potential—and everybody has a family, which means they care about easing suffering and saving lives.
Business lunch clubs, like Rotary, need speakers. If they meet once a week, they run through speakers pretty quick, so you are just about guaranteed a chance to speak.
You’ll go, eat a nice lunch, talk about stem cell research. Mostly, you’ll talk about your personal reason for involvement, so they know WHY.
You’re not a scientist, so they won’t expect you to know everything, but you will be as prepared as you can. (WWW.AMERICANSFORCURES.ORG, and WWW.STEMCELLBATTLES.COM, and WWW.CAMRADVOCACY.ORG are three good sources for “people talk” information.
Take their questions, answer their concerns. If they ask a question you do not know, just say I don’t know that one, I will get back to you. (take their email address.)
If they say something outrageous, do not repeat their accusation in your answer, particularly if there is a camera in the room. If you say, “Stem cell research has nothing to do with KILLING BABIES”, guess which two words people will hear?
Instead, say, “stem cell research is cells, cells, nothing but cells—stem cell research is nothing but cells—and the hope of cure.
Be endlessly polite, but insist on accuracy. You will always find one or two opponents in every group, and you may have to correct them gently if they mischaracterize the research.
Keep in mind, the person you are trying to reach is not the objector, but the people listening while you argue. They are the ones with their minds not yet made up, the ones we can reach.
When you speak before a business group, you may also influence the local churches. A lot of the same folks sit on boards for both business and communities of faith organizations. It is a whole lot tougher for a church to attack stem cell research if its board of directors—the folks who fight for the Church’s funding—understand what is really at stake.
Sam or Susan might be a Catholic, whose official leadership opposes our research. But if they are Rotarians, and heard you speak about your daughter Catherine who has type one diabetes, and how Stanford University is working to use embryonic stem cells to try and find an answer—they might become part of the estimated 72% of American Catholics who support esc!
They might even give you a business card, and offer to help if he can. And where do you put that valuable name and phone number and email?
YOUR HANDY-DANDY STEM CELL PHONE BOOK
I know, you are probably very modern and computer-savvy, but for me a nice three-hole binder with the contact info of stem cell friends is so handy!
The first part of the book is for frequently-called friends; the second is an alphabetical listing of states, and advocates who live there.
For me it is the single most valuable advocacy tool, a way to reach friends in a hurry.
And what will we ask our friends to do?
THE STEM CELL SUPPORT LETTER ANYBODY CAN WRITE
Nothing is more central to our efforts than communications to press, fellow advocates, or legislators.
Many people do not write letters to the editor or to their legislators, because they think they cannot.
But everyone can write one sentence, true? Especially if it is already written for them…
So, here is your handy-dandy One-Sentence Letter Writing Kit.
I, (BLANK), support/oppose (BLANK)
That’s it. Just plug in the name of the sender and the name of the bill you support or oppose. If your friend wants to add something, they can, and they usually do. With the foundation in place, most folks will almost certainly add a sentence or two, about why they care, their loved one who has cancer or Alzheimers.
But that one sentence is all you need for a letter to a legislator. Generally speaking, letters from constituents are read by legislative aides, who keep track of support or opposition on their leader’s positions. Almost no one reads more than a page anyway, and the aides (legislative aides are crucial to us, be kind and considerate with them at all times!) have too much work to do, and will seldom read further in the letter than where the constituent stands.
A letter to the editor begins the same way. Add your personal involvement, and the local paper will almost certainly print it.
And remember: even an unprinted letter to the editor has impact-- because it educates the editors…
BACK TO THE EIGHTH GRADE…
For big results, write small. Re-read the preceding sentence, please, and check out the size of the words. “For big results, write small.” Only the word “results” had more than one syllable.
This matters. The average human being processes information at the eighth grade level. This is no insult to him or her: just reality. If you explain to me how your car works, you might want to go back a little bit earlier than that—well, actually a whole lot earlier—okay, start with the part that says, a car has four wheels, which go round and round.
This is how people are. The specialized information you and I took years to learn cannot be given to anybody in the words we now know—think back to when you first began learning about this stuff.
My first spinal cord injury conference, I could not understand the scientists at all. I felt like Gary Larson’s “Far Side” cartoon dog who understands only one word of human: his name, which happens to be Rex. The human is yelling at Rex, for digging up the roses, and all Rex hears is his name—Rex, blah blah, Rex—I only understood three words—spinal cord injury, and I would wait for them. Inbetween, I would nod off because my small brain went into overload.
So, have mercy on your listeners.
THE SECRET OF SPEAKING AT A COMMITTEE HEARING.
Write it out beforehand. When you speak at a committee hearing, you typically have 2-3 minutes, and that means just that: 120-180 seconds. After that, they will stop you. If you have to pause and consider on the stand, you have pretty much lost. So have every word planned out in advance. Don’t try to recite from rote memory, but know it really well. You can read it if you like. No problem with that, the legislators themselves always bring note. But however you do it, know what you are going to say before you get up there.
JOIN CAMR
The single most important organization in stem cell research is the Coalition for the Advancement of Medical Research. (www.camradvocacy.org)
Why is this one group more important than another? Because it is all our groups put together. In addition to giant organizations like the American Medical Association (AMA) and the Juvenile Diabetes Research Foundation, (JDRF), it has medium-sized groups like the up-and-coming powerhouse, Americans for Cures Foundation, and little tiny ones like Karen Miner’s and my group, Californians for Cures.
Remember the Stem Cell Research Enhancement Act, which passed both houses of Congress? That effort was led by CAMR, and twice vetoed by President Bush.
Remember the Cloning Prohibition Act, which would have jailed scientists, patients, doctors and anybody else who had anything to do with Somatic Cell Nuclear Transfer (SCNT)? That bill was enthusiastically supported by President Bush—but it was defeated four times—CAMR again.
CAMR has (I think) one and a half paid staff. The President works for free. These are supremely dedicated men and women, champions like Amy Rick, Dan Perry, Jennifer Poulikidas, Sean Tipton, Tim Leshan, Kim Love, Amy Daly, Michael Manganiello, Tricia Brooks, and many more.
Sometimes (on an individual basis) they support state efforts.
So, if you don’t have a group, start one.
And then join CAMR. If you are small, like my personal group, Californians for Cures, the fee is very little. I pay $100 a year. If you are big and powerful, like Juvenile Diabetes Research Foundation, you will pay more, which is reasonable.
END THE DICKEY AMENDMENT
The Dickey-Wicker Amendment is a national law which must be renewed ever year. If we do not renew it, it is automatically gone. Generally the Amendment is attached to some must-pass legislation, like a farms bill. We have to stop this endless blocking of stem cell research funding.
As long as the Dickey Amendment exists, the NIH cannot fund the development of a single new line of embryonic stem cells.
Interestingly one of the co-authors of the bill, Roger Wicker of Mississippi, asked that his name be removed from the amendment, so it is now the Dickey Amendment.
And who is James Dickey? He was recently voted out of office, as apparently too conservative for Arkansas.
But the Dickey amendment blocks the NIH from funding new lines for hESC research, plus parthenogenic lines, SCNT lines—it is re-written every year, and every research supporter should be united in getting rid of it.
Why does that matter for a state effort?
Removing the Dickey Amendment would allow matching funds for state efforts which allow embryonic stem cell research…
How important are matching grants?
A SOURCE OF UNEXPECTED MONEY
Would your state bill be small? Maybe so: but little seeds grow big trees. The Roman Reed Spinal Cord Injury Research Act is very small as research laws go—just a million and a half dollars a year—but there are unexpected ways to make that money grow.
Over the eight years of its existence, Roman’s Law has funded $12.5 million dollars of research—and attracted almost $51 million dollars in matching grants from the National Institutes of Health (NIH)-- $12 million became $62 million…how does that work?
Many scientific experiments do not get funding. The scientists apply through the NIH, go through months of mind-blinding effort to write their grant applications, and then are turned down. The experiment dies. Maybe it could have been wonderful, but without funding, it dies.
But if that experiment is funded by a small state efforts like Roman’s law, and it succeeds—then it is almost guaranteed additional funding from larger sources.
One of those experiments, which was turned down elsewhere was Dr. Hans Keirstead’s work with embryonic stem cells at UC Irvine, an attempt to treat acute paralysis.
Roman’s law funded that experiment, which succeeded. I will never forget the day, March 1, 2002, when I stood in a laboratory named after my son, and held in my hands a rat which had been paralyzed, but which walked again.
The Keirstead approach, furthered an |