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# 175 Thursday June 22, 2006 - "NOBODY REALLY CARES."-- LETTER TO THE BIOMED COMMUNITY "Nobody really cares about this issue," said Dana Cody, referring to embryonic stem cell research."I don't think it's a big deal to most people..."* Dana Cody is executive director of the Life Legal Defense Foundation. For her, embryonic stem cell research is a very "big deal" indeed-because her group is suing to shut down our California stem cell research program. Her point was raised in a recent article by Chronicle reporter Carl Hall : Do people care about the research, enough to do something about it? As Hall puts it, "advocates acknowledge. their own failure to stir much excitement outside the ranks of patient advocates. Talk of organizing a "Million Patient March" on Washington, for instance, has sputtered because advocates aren't even sure they could muster 100,000 - barely enough to tie up traffic around the Capitol Mall." This is an important issue, which deserves consideration. First, though, I must follow up on two members of my family. I am delighted to report that Gloria is doing much better. The pneumonia is easing its grip on her lungs, and she was able to go about half a day yesterday without the oxygen tank. She is not well yet, but she is progressing. About her brother Marty, the news is not so good. The stroke has interfered with his muscular control of the left side. While we don't know how much of the damage is permanent, it is at present serious. The left leg is weak; he has fallen several times, and will need a walker for the foreseeable future. While he can open and close his left hand, its coordination is way off. One of the tests is to touch one's nose, and he cannot aim the hand that accurately, tending to touch his forehead instead. Gloria and I are trying to convince him to move in with us for a while. We have a spare room, and he would be more than welcome. But I wonder how likely it is that he and Gloria (with her wheeled tank of oxygen) would get involved with a "Million Patient March" to Washington? It is one thing to rent a bus and jam it full of healthy people. They can put up with overheating, infrequent bathroom stops, and being jolted around for a few days. But a patient? Do we really expect someone in a power chair (needing an electric lift just to get on the bus, for starters) to voluntarily cope with several days on a bus? Paralyzed people often cannot handle temperature changes; overheating for them can mean death. Infrequent bathroom stops? Catheterization. And don't even think about the bowel program. Still, some patients do find ways to participate in the grinding days of politics. Susan Rotchy, Fran Lopes, Karen Miner and a handful of other wheelchair drivers often make their way to the Sacramento state Capitol to testify for stem cell research. It is not easy for them, to put it mildly, but they will be there. But even beyond the physical concerns, there are other issues. Emotionally, it is very difficult to hope, when everything around you says no. The way I understand it, is this: Imagine you are hanging on to the edge of a cliff, just by your fingertips. Would you welcome an earthquake? Most patients are too involved in just struggling through their day to day lives to have anything left for political action. Does that mean the public does not care about the research? Hardly. How many recent medical breakthroughs can you name that everybody knows about? Everybody who can read or watch TV knows at least a little something about embryonic stem cell research. Does it make a difference in votes? You bet. Look at Missouri, where pro-research challenger Claire McCaskill had a two point lead over anti-research incumbent Jim Talent-until he publicly broke with Sam Brownback, removing his support for the ten year jail sentence for Somatic Cell Nuclear Transfer, which Brownback hopes to make law. Immediately, Talent jumped ahead-instead of being behind two points, he is up by three (43% to 40%, according to the Rasmussen Report)-five points difference in a close race is huge. Look also at the National Republican party's outright refusal to take a stand on Missouri's initiative (to allow any stem cell research which is legal in America to be legal in Missouri-meaning SCNT) Republicans can read polls quite well. Never in history has a nation so enthusiastically supported medical change. Seventy-two per cent in favor of embryonic stem cell research? Unprecedented. Does that mean we are sufficiently involved? Unfortunately, no. Do you realize that the most powerful support group on our side, the Coalition for the Advancement of Medical Research, has exactly one half of one paid employee? This magnificent organization is all volunteer. We must have more support from our professional groups. Scientists, doctors, and especially the biomedical industry in particular should get off their collective gluteus maximus and get involved in the political process. I am so sick and tired of hearing the opposition rant about the biomed industry controlling Prop 71 and making gazillion dollar contributions- false, false, false: I wish they were making contributions-- but the reality is just the opposite. The opposition (including the Catholic church, the single richest property holder in the world) is hitting the research hard and continually. But biomed? The California Health Institute, the lobbying arm of our state's biomedical industry, will occasionally make a genteel public statement about an issue, perhaps-to heck with that noise-time to get in the trenches with the parents! Biomed in California alone is already big as the aerospace industry-but it is a timid giant, so desperate to not look politically manipulative, that it is itself manipulated. It is like when little Harold keeps beating up Sam. Sam's mother keeps saying "It's not nice to fight, don't hit back" and the other mother agrees-while egging her own kid on, "Kick him, Harold!". In that situation, I would send Sam to karate school. Biomed folks and scientists, hear me now. There are people who want to shut you down-and they are making campaign contributions to politicians who oppose you, buying TV time for leaders who want to shut off your funding-will you sit by and watch? We know you are busy; we know you hate politics. Of course! Who likes the fire? Naturally, you want to just go about your business, (which, heaven knows, is tough enough)-but while politicians work to impose strangling restrictions on you? Are you in favor of someone like Sam Brownback passing legislation to put handcuffs on biomed, and send scientists to jail? If that pleases you, do nothing. But if you want science free to move forward, (and especially if you want access to research grants supported) then don't let the patient advocates fight alone. We are just parents, mostly; we will do our best, but we need your help. So take off those white coats, roll up your sleeves. When the opposition talks trash about the science you support, don't just sit there, fight back. Don't let their lies go unanswered. Do something. You are fighting for yourself, and for us all, we who support your work, we who do not have your credentials. You, personally: write letters, make donations, make statements to the press. (One easy thing you can do right away: at the end of almost every article on the web is the email address of the reporter who wrote it-if you don't agree with something he or she said, use that email-respond). Do something. Pressure every organization you belong to: not only to take stands on stem cell issues, but to buy ads, and make actual political contributions to candidates who support your views. Remember, the opposition is doing this, has been doing this, and will continue to do this- all the while hoping you will not. It is your right to stay out of the struggle. But if you choose to sit idly by and watch your friends get beaten up, don't complain when your enemies make the decisions. Don't whine when the NIH budget is cut, as it was this year, and will be next year. And don't whimper when your rights to research are taken away. *"Backers to push stem cell issue across country", Carl Hall, San Francisco Chronicle, June 12, 2006. By Don Reed, www.stemcellbattles.com Comments or Questions ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn