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# 128 Monday, April 17, 2006 - SACRAMENTO, CALIFORNIA, AND THE WORLD Tomorrow morning, bright and early, outside a little house in Dixon, California, a van door will grind open. A mechanized ramp will unfold slowly, most of the way, encouraged by a couple of kicks. "In, Yukon, in- good boy!" Karen Miner will encourage her golden retriever with the purple banner around his neck, as the service dog climbs in the van. This is the second attendant dog Karen has had since we began these little trips to the State Capitol to argue for research. The first was Baxter the wonder dog, but he grew old. With a click and a rumble, like a little tank, Karen's powerchair will move up the ramp, bending it a little more. With paralysis-stiffened fingers, she will negotiate across the van's newly carpeted floor. Carpeting is not designed for 350 pound wheelchairs. We'll leaving my blue Volkswagen with the YES ON 71 bumper stickers in front of her house, for the neighbors to speculate about. Our little dog-and-advocates act is heading for Sacramento again, this time for the hearing on Senate Bill 401, the latest in a series of attacks on the California stem cell research plan. It will be a long day. The meeting is scheduled for 1:30, but the bill we are concerned with is scheduled for the very last. We could be there five-seven hours waiting, after which we may or may not be allowed to speak. If the bill is brought up, the legislator offering it will get ten or fifteen minutes to make the case. Then it will be the advocates' moment: for, and against, the bill. Typically, two speakers from each side get three minutes each. The rest are allowed to say their name, group, and where they stand. "Humphrey Bogart, Maltese Falcon Society, in opposition." "Peter Lorre, Unforgettable Movie Villains Association, in support." How many advocates will show up? No way to know. Karen and I have been doing these since 1998, and we always phone a couple friends to come along, and every time we wonder, will they make it? Will we be the only speakers in opposition? There may be a representative of the California Institute for Regenerative Medicine present, or not. As a state agency, there are limits to how much they can defend themselves. We hope our local and out-of-state friends will write their e-mails backing us up. (That's why this is written on Monday, hint, hint). Because what happens in that small committee room is not about California alone; it affects every family in America, and the world. Consider: with just the little bit of funding so far-the $12.1 million in gift-loans-we have already increased the embryonic stem cell research of the National Institutes for Health by 50%. That $12.1 million funded sixteen college stem cell research programs and 170 researchers. Imagine when the money available is more than twenty-five times that much? Instead of twelve million, it will be $300 million a year-every year for ten years. If disease was a monster, something physical we could attack, (and oh, how I wish it was!) it would be trembling now. Because never before has there been such seed money available for stem cell research-it will be astonishing the difference it will make-- if the program is allowed to proceed. This is not just for the Golden State; wherever you live, this is for you. We've been working on our speeches, getting ready for our few seconds, when the chairperson of the committee will say, "Is there opposition?" Then we will go forward, Karen, myself, and whoever else is there. Will the legislators be polite, and listen? Or will they just put up with us as a nuisance, and chit-chat among themselves, rustling a stack of papers, looking through their appointment books, getting ready for some other bill? No way to know. It is a little scary, going up against trained professional debaters, many of them lawyers, all of them in their home turf, and endlessly well-practiced in the duel of argument. There could even be trash talk against us, especially since it will be late and the press will be gone. (This is always frustrating, because while they can say whatever they want, we are only allowed the one brief opportunity, and if we try to answer them after that, there are sergeants-at-arms who can evict us from the room. One legislator told me I was wasting my time because my son would never walk again. She had an aide take the microphone away from Karen as she spoke - not a difficult task because Karen has a high level spinal cord injury, quadriplegia, severely limiting the use of her arms and hands. Another said, (of paralyzed people), "They did it to themselves, let them get themselves out of it." Tomorrow will be especially difficult because we have no Senator backing us. In the past, when Karen and I were speaking in support of Senator Ortiz's stem cell research bills, we would check into her office before the meeting. Her staff would make things easy for us, help us cope with the political maze. But now we are in opposition to her bill. There will be no coffee and solicitous remarks. Understandably, they will not be eager to help with language or key points - just the opposite. We will be on our own. Here is roughly what I plan to say. "I am Don Reed, of Californians for Cures. My son Roman Reed is paralyzed; my sister Barbara is currently in the City of Hope fighting both cancer and leukemia. I oppose Senate Bill 401. It violates the will of the California voters, who overwhelmingly supported Proposition 71, including the provision that there be no legislative changes for the first three years. This is an end run around the intentions of the electorate. SB 401 is based on inadequate information. Just a few weeks ago, March 8, the authors of this bill requested a full performance audit of the California stem cell research program. This is a major 6 month study, to see if there was need for improvement. Yet now, before that information has even been gathered, without the data the authors requested themselves, SB 401 will impose permanent restrictions. SB 401, like its authors' own previously rejected Senate Constitutional Amendment 13, takes reasonable ideas and carries them to extremes: like requiring all scientific proposals to be written up and exposed to the public view, including those rejected. Not only is this a waste of precious California research dollars, but it may bring unforeseen and unintended legal problems of disclosure. Would other state agencies be required to write up and publish their reasons for rejecting all the projects and proposals and ideas suggested to them? SB 401 mandates minimum licensing conditions, which sounds good at first-- but what if a royalty-free arrangement is the best way to advance the science? Prop 71 was never intended to be a cash cow; its purpose is to ease suffering and save lives through research for cures. The California stem cell research program has already been held up by lawsuits for almost a year and a half, and no end in sight-- but SB 401 is written in such vague language that it practically invites lawsuits. For example: "The ICOC shall seek licensing conditions that would provide greater financial benefits than those required by paragraph (1) where it is possible to do so without hindering research..." "Shall" is a command; "where it is possible" is an opinion. How is it possible to know in advance which licensing conditions will hinder research? Who decides? What are the consequences of violation? We are not told. But the opposition will be going over this new language with a fine-tooth comb, matching it up against every new decision, hoping they have found another license to sue. SB 401 is duplicative and unnecessary. Every legitimate issue it contains has been or is being dealt with by the Independent Citizens Oversight Committee, in an exhaustive series of more than 60 public meetings. But, the argument is made, even when the ICOC comes up with good regulations, they cannot be trusted-because those decisions could easily be changed. This is false. The ICOC policy decisions cannot be lightly changed, as such changes require a 70% majority of the ICOC. SB 401 is an expensive, regulatory nightmare. And every dollar the new regulations require is a dollar taken from research funding. For example, SB 401 requires that every intellectual property agreement-and there may be hundreds, even thousands of these complicated documents- must be approved by the Attorney General's office. How many thousands of expensive lawyer hours will this cost? And every dollar spent on attorney opinion is a dollar that could have been spent on research for cure. In conclusion, Senate Bill 401 serves no useful purpose. Far from "improving" the California Institute for Regenerative Medicine, it would instead offer new grounds for frivolous lawsuits against our new stem cell program, delaying or outright denying the research so overwhelmingly approved by the California electorate. Thank you. Well, that is still a little long. I have to shorten it a little, (or talk a little faster) to fit inside the three minute limit. What will Karen say? Stay tuned to this column and find out! The advocate's hour will return after a short (48 hour) intermission. Tomorrow's report (24 hours from now) will be on a different subject, which I am writing today, as I expect to get home way past my bedtime. And-- if you haven't gotten around to sending your message to the committee yet, here is an astonishingly simple way to do it. It is sooooooo easy. Just click on the following link and it will instantly set you up to send one letter to all the assembly members at once. You can write the letter - or use the sample below-- and send it off in five minutes. Please include your address and phone number, even in an email-a phone number says you are real; or the office staff may just delete the message.) http://www.aroundthecapitol.com/act/billletter.html?bill=sb_401&cmtehouse=A&cmte=HEALTHYour nameAddressPhone numberDear Assemblymember:I (or my family member) have (medical condition).We urge your NO vote on Senate Bill 401, (Ortiz,Runner).SB 401 would make the California stem cell research program far moredifficult and complicated, and could offer new grounds for lawsuits to shutit down.We are tired of delays on the California stem cell program.Please vote NO on SB 401.Thank you.Please feel free to use the above sample letter. Just put in your owninformation, select and cut it, go to the url, paste it into the big windowyou will see instantly, and click send.You will be helping protect the California Institute for RegenerativeMedicine-- which will multiply the effectiveness of every other stem cellresearch program in the world. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn