Posted on 12/19/2004 11:01:10 AM PST by NormsRevenge
Two years ago last weekend, a determined state legislator met with a group of scientists to talk about an idea eavesdroppers might have thought was far-fetched.
Over dinner at the trendy Esquire Grill in Sacramento, the group discussed putting together a coalition of patient advocates and scientists to sponsor a state bond initiative that would provide money for stem cell research.
President Bush had signed a bill a year earlier limiting the embryonic stem cell work scientists could pursue with federal dollars, and some conservatives in Congress wanted to criminalize the research.
The group at the dinner in Sacramento wanted to make California the global center for the work, which many scientists believe will one day lead to therapies for devastating diseases.
Sen. Deborah Ortiz, a Sacramento Democrat and the legislator who was at the dinner, had just failed in an attempt to get the state Legislature to commit a few million dollars a year to studying stem cells.
However, she had been successful three months earlier in getting the Legislature to approve a bill that made stem cell research legal in California.
Now she wanted to do something more ambitious. "Let's take this to the voters," Ortiz suggested to her dinner partners. A public bond initiative would be the vehicle for securing the funding that the scientists at the table thought was vital.
Out of that discussion grew Proposition 71, the bond issue voters approved last month that will make $300 million a year available for scientists in California to pursue stem cell research over the next decade.
The independent citizens' oversight committee that will govern the effort met for the first time Friday, and its goal is to start distributing the money by May.
The path from that first dinner in Sacramento to Friday's meeting of the oversight committee was an arduous one, as a core group of a few people built a network of supporters and raised millions of dollars to promote their vision.
From the beginning, the idea was for the faces of the initiative to be those of parents with sick children, people with a personal stake in helping support science that could one day lead to cures for diseases such as diabetes, Parkinson's, Alzheimer's and cancer.
Meet the Zuckers Three months after the first dinner, a group that included such parents gathered in the Brentwood home of movie director Jerry Zucker and his wife, Janet. The Zuckers' 16-year-old daughter, Katie, was diagnosed with juvenile diabetes when she was 11.
During the previous two years, the family had logged hundreds of hours on Capitol Hill and in politicians' offices across the country lobbying for stem cell research as part of Cures Now, a patient advocacy group. They also had been active in the Juvenile Diabetes Research Foundation.
Ultimately, the Zuckers and two other affluent and politically savvy families took the lead in funding, organizing and campaigning for Proposition 71, the California Stem Cell Research and Cures Act. They spent millions of dollars on polling, lawyers and consultants before they were even assured that enough Californians would support the measure to put it on the ballot.
The three families – which also include millionaire Bakersfield home developer Tom Coleman and his wife, Polly, and Bay Area real estate finance expert Robert Klein – have widely divergent political and religious beliefs. But all have a child with juvenile diabetes.
"These families have dedication, passion and an ability to articulate to the people of California the simple hope, like all parents, to see their children into adulthood," Ortiz said.
The first meeting at the Zucker home attracted an eclectic mix.
Janet Zucker had worked the telephone, as she's known to do, inviting friends, patient advocates and nationally recognized scientists. The group of more than 30 included Zucker's friend Sherry Lansing, the head of Paramount Motion Pictures and an advocate for cancer research; Lucy Fisher, a Hollywood producer who along with her husband, Doug Wick, also were active in Cures Now; and renowned stem cell researchers such as Larry Goldstein of University of California San Diego and Irv Weissman of Stanford.
Tom Coleman, a Republican and a Catholic, remembers sitting in that first meeting at the Zuckers' home and deciding immediately that he wanted to join the effort.
His eldest child, Sarah, 28, was diagnosed with juvenile diabetes when she was 5. Despite the name of the disease, it is a lifelong affliction that can cause limb loss and organ failure and shorten life expectancy.
Bush had approved the limitations on embryonic stem cell research because the work requires the destruction of embryos, collections of 100 to 200 cells that are formed days after fertilization. The Roman Catholic Church and conservative Christian groups oppose the science because they believe the embryos are human life that should be protected.
Coleman said it is not the first time he has disagreed with the church.
"It became a very easy decision for me," he said. "Either you throw away an embryo with no designation as a human being or use it to help another human being. I don't think that violates Christian principles of the Catholic church."
Science vs. politics The Zuckers, who are Jewish, also did not struggle with the moral issues of embryonic stem cell research.
They recalled when their daughter was first diagnosed with juvenile diabetes. She had lost about 20 pounds and was listless. Then, after an injection from a tiny glass vial, she was smiling and bounding down the halls of Children's Hospital in Los Angeles.
They say such experiences underscore the value of medical research.
"You can't help but take a minute and have gratitude for the people who invented this stuff and worked so diligently to find it," Jerry Zucker said. "The more we got into this, the more we realized how scientists really have to struggle against politics, and often religion, and small-minded people who always think (the scientists) have gone too far whether it's organ transplants or recombinant DNA. The next new thing always seems ghoulish or scary.
"But when these cures become commonplace, we are all lining up to take them," he said.
The Zuckers and the Colemans paid for early polling and political consultants to help them wade through the start-up of a voter initiative.
The early polls showed voters would embrace a bond initiative, though not by a landslide. It also showed that the more people understood stem cell research, the more likely they would be to vote to fund it, Tom Coleman said.
From the beginning, the families decided the campaign would be straightforward and educational.
"We saw that some people just didn't understand stem cell research, particularly embryonic stem cell research," Jerry Zucker said. "Some people think an embryo is a fetus. And they don't realize embryos are being discarded when they could be used for research."
While the direction of the campaign was clear, how to write a bond initiative was not.
Janet Zucker recalled talking to Peter Van Etten, president of the Juvenile Diabetes Research Foundation, about the possibility of a voter initiative. She knew she and her husband could handle the lobbying and probably the fund raising the initiative would require.
"But I thought that this bond initiative – actually writing this thing – was going to be a daunting task. Where would we start?" she said during a recent interview in the family's home.
Van Etten told Zucker about Klein, a Palo Alto-based real estate finance expert who served on the Juvenile Diabetes Research Foundation's board of directors. Klein, who also is a lawyer, wrote the California Housing Finance Act more than 20 years ago.
Janet Zucker remembered picking up the telephone to cold-call Klein, whose interest in stem cell research is a result of his son Jordan's struggle with juvenile diabetes.
"We spent three or four hours talking about it," she said. "Then he was on the phone again the next day."
Drafting the initiative When Klein first heard about the initiative, he knew its structure would have to be creative. It needed to take into account that the state was fighting a deficit. And it needed to be structured so the bonds didn't have to be repaid until the research had time to generate scientific advances that would bring in revenue for the state.
Many people have come to think of Klein as the author of the initiative. It is not a notion he is quick to dispel.
"The initial conceptual plan took about two weeks, but actually writing the initiative took 30 drafts and about eight months," he said.
The Zuckers and the Colemans said the measure never would have been as successful without Klein's involvement. He was its voice during the last intense months of the campaign. He also formed a nonprofit organization to help appoint the citizens' oversight committee that will administer the grants.
But writing the initiative was definitely a group effort.
There were several writing sessions, consecutive days when a group that included the Zuckers, Colemans, Klein, political consultants, Goldstein and lawyers from some of the state's top firms hunkered down and hashed out the wording.
The first session, during which the group set its initial principles, produced the skeleton of what would become Proposition 71. The next several months were filled with conference calls and meetings where the families, the lawyers, the consultants and the scientists vetted every word and every statement.
Was a sentence politically sound? If so, was it legally sound?
There were complicated issues to debate – how should repayment of the bond be structured, considerations about science and intellectual property issues to address, and rules for avoiding conflicts of interest.
"We could have maybe 50 issues on the table," Tom Coleman said. "We put them in some kind of priority, but as each piece changes, all the issues related to it change. As time progressed, each detail was dealt with in much greater detail."
One of those issues was the price tag.
There was discussion about how much it might cost to create a cure for a disease like polio, Coleman said. And there was discussion about how much the National Institutes of Health spends on a particular disease.
"But you also have to look at what kind of money a particular university might need," he said. "And there was a conversation about how much we need to attract the top scientists in the world to come here, knowing that there's funding for 10 years. You can quickly reach that $3 billion figure."
The members of this group commissioned a financial analysis, which found that the initiative could easily pay for itself even if it contributed to only small advancements in health care.
Proposition 71's passage The Zuckers, Colemans and Klein still afford themselves a few brief moments to relish the success of Proposition 71, which 59 percent of voters supported.
Jerry Zucker remembers the strength of so many people suffering from so many diseases.
"I remember seeing Christopher Reeve in Washington when we were both lobbying," he said. "I'd be getting off a plane and going to the Capitol to a lunch to make a speech or my pitch. And then there (Reeve) is. For him, every single breath was an effort. It was just so courageous for him to come and do that and speak in this way. For so many people who are suffering like that, there really is no place to turn but science."
Asked if they would like to tackle another initiative, the Zuckers and Tom Coleman laughed heartily. They will be watching closely as the independent oversight committee begins to create standards and then dole out grants. But they have no designs on serving on the committee or any of its working groups.
Klein, however, is front and center.
Long considered the front-runner for the position of chairman of the committee that will oversee spending of the $3 billion, he was the only candidate nominated for the post. The Democrat even won the endorsement of Gov. Arnold Schwarzenegger, to whose campaign he never contributed.
The 27 appointed members of the oversight committee unanimously voted him into the post at their first meeting Friday.
Klein's interest in stem cell research is a result of his 14-year-old son Jordan's battle with juvenile diabetes.
"Jordan's growing about a half inch a month right now, and the human growth hormone really throws blood sugar levels out of whack," he said during a recent interview.
"How can I turn my back on this?" asked Klein, whose father died of heart disease and whose 88-year-old mother developed Alzheimer's a decade ago.
"It's a privilege to commit yourself to something that has the potential to do as much for medicine and human suffering as stem cell research has the potential to do."
"And they don't realize embryos are being discarded when they could be used for research." This argument, which gets repeated over and over, is extremely misleading. Yes, they will do research on 'left-over' fetuses, but you cannot use these for therapy. The body will attack any tissue from another individual, including a stem cell. To apply the therapy, they have to take a fertilized egg, strip out the nucleus, and replace it with the nucleus from the cell of the recipient. That is, they will be creating a life and then destroying it. That is what causes ethical issues, but the Left has been able to confuse the issue, which of course, get accepted as fact by their willing accomplices in the media.
" at the trendy Esquire Grill in Sacramento" is an oxymoron. What makes it trendy? Do they put parsley on their meatloaf?
CA: How Prop. 71 came to life.
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'Cuz Promise of 72 virgins was just a wee bit too expensive !!!
Gotcha !!! ;-))
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