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My Meeting w/ US House Rep. Howard Coble (R-NC)

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    My Meeting w/ US House Rep. Howard Coble (R-NC)

    Although my father and I take extreme opposite sides of the political fence, we both agree on the urgency of the stem cell issue and would like to see President Bush reform his current policy.

    We've arranged for a meeting tomorrow with our representative in th US House, Howard Coble (R-NC.) The purpose is to put a human face on the stem cell issue and seek advice on how to bring about what we deem as necessary reform. I also want to gain a better understanding of the Republicans' current position and its efficacy.

    In a nut shell, Rep. Coble supports ethical stem cell research but does not believe embryos should be created and used for research purposes only.

    He responded to me in a letter that he "generally" supports Pres. Bush's limited research policy, in that he believes Bush has "handed researchers the tools necessary to advance medical discoveries." He goes on to express his disappointment in how stem cell proponents have "chosen to make this a political issue and not one based on sound science and good policy." Is this accurate? What evidence shows that it is, or is not?

    What is the current "sound science" and what would be a "good policy"?

    I don't wan't to pull a Kerry and blame and finger wag without viable solutions.

    Any suggestions on specific talking points to bring up tomorrow would be genuinely appreciated.

    "The essense of greatness is the perception that courage is enough." R. Waldo Emerson

    Off the top of my head, loosening the existing restrictions to include the lines that have been created with private funds in the last three years would be considered a safe bet.

    Suggesting that current funding of adult stem cell research be significantly increased, due to the lack of ESC research funds, is also safe.

    Sound science. So far, there isn't enough defintive evidence to silence the critics on either side of the fence. Those who oppose embryonic stem cell research say that adult stem cells are as robust as embryonic stem cells. In order to find out, they need to prove or disprove the theory of transdifferentiation. If it can be proven that adult stem cells can transdifferentiate, embryonic stem cells won't be needed. That should be a big talking point and carry a lot of weight. If he likes this idea, ask for a special allocation of say $20 million over two years to study just that.

    ...'scuse me? Are you lookin' at me? Did you rub my lamp?'s worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.



      I don't know how receptive Congressman Coble will be. You can try to point out the following to him:
      • the leading scientists in the United States, including the National Academy of Science, have recommended that it is good science and policy to allow human embryonic stem cell research to go ahead as proposed by NIH, i.e. the study of stem cells from frozen embryos that fertility clinics are throwing away.
      • the policy has not saved a single embryo and encourages unregulated and unmonitored use of embryos.
      • President Bush was mistakened when he thought that there were over 60 human embryonic stem cell lines available, that there are only 22 such line, that all of them are contaminated with mouse genes, and that most scientists think that it is not sound science or policy to study such a limited set of contaminated cells that can never be used in humans.

      I suspect that he will not listen to these arguments because they have been presented to Congress and the White House many times. You should be able to tell within five minutes of the discussion whether he has already closed his mind on the subject. If so, I think that the message that he would be more receptive to would be:

      • the importance of funding spinal cord injury research because so many therapies have been shown to regenerate the spinal cord,
      • the urgency of funding clinical trials that would benefit so many people.
      • the need for more adult stem cell research funding if embryonic stem cell research is held back.

      You can talk to him about the Christopher Reeve Paralysis Act that the House passed unanimously two days after Christopher Reeve died but has been stopped in the Senate due to politics. You can tell him that the spinal cord injury community has been despondent because there has been no positive word coming from the leadership of this country at all concerning the priority for research and cure. All the claims of false hope has had the effect of removing hope from people that they will ever get out of their wheelchairs.



        Here's a great website where you can find some valid points to discuss...
        Stem Cell Research 101/Click Here
        Besides the info on the main page here, look at the left menu and click on State Legislative Tool Kit, then click on Learning about the Issue-Stem Cell Research 101.
        Lots of good talking points.
        Good Luck and thanks!


          spaceboy - Using leftover, soon-to-be-discarded embryos from fertility clinics should be allowed. There is no ethical argument against it. It is just like donating organs from a person before their life support is turned off. Except a parent donates cells from the embryo before it goes in the disposal. So #1, using leftover embryos from fertility clinics should be allowed.

          #2, there should be no restriction against using private funds to study non-approved ESC lines in labs that receive NIH funding for other projects. That provision is really low, IMO.

          The next big one is to allow somatic cell nuclear transfer, SCNT, as a way to produce stem cells. This process might be harder to sell. It means basically transforming a haploid egg cell into a diploid cell capable of cell division that produces stem cells. I believe this process does not produce an embryo capable of becoming a fetus. Nor would scientists attempt such. The key to selling SCNT is that the nuclear transfer never produces an embryo. Just a dividing group of cells.

          Best regards on your meeting. And thank you for pitching in your support.

          ~See you at the SCIWire-used-to-be-paralyzed Reunion ~
          ~See you at the CareCure-used-to-be-paralyzed Reunion ~


            Wise, could you check this PT real quick?

            Thanks. [img]/forum/images/smilies/smile.gif[/img]
  's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.


              Best of Luck tmmrw, Spaceboy. May God open up the Republican soul just for a time to see what we go thru; day after day.




                Steven Edwards just rightly corrected me that the House did not pass the Christopher Reeve Paralysis Act (H. R. 1998, introduced by Congressman Bilirakis) and referred to the Health Committee on 5/7/2003
                To enhance and further research into paralysis and to improve rehabilitation and the quality of life for persons living with paralysis and other physical disabilities, and for other purposes.
                . Representative Howard Coble is not one of the sponsor. The list of sponsors is as follows.

                Rep Andrews, Robert E. [NJ-1] - 7/18/2003
                Rep Baldwin, Tammy [WI-2] - 6/25/2003
                Rep Bradley, Jeb [NH-1] - 9/4/2003
                Rep Brown, Sherrod [OH-13] - 5/7/2003
                Rep Brown-Waite, Ginny [FL-5] - 7/18/2003
                Rep Burr, Richard [NC-5] - 9/8/2004
                Rep Carson, Brad [OK-2] - 6/24/2003
                Rep Carson, Julia [IN-7] - 6/24/2003
                Rep Case, Ed [HI-2] - 7/18/2003
                Rep Costello, Jerry F. [IL-12] - 6/25/2003
                Rep Cox, Christopher [CA-48] - 7/18/2003
                Rep Deal, Nathan [GA-10] - 6/3/2003
                Rep DeGette, Diana [CO-1] - 6/25/2003
                Rep Deutsch, Peter [FL-20] - 9/9/2003
                Rep Dingell, John D. [MI-15] - 6/3/2003
                Rep Engel, Eliot L. [NY-17] - 5/7/2003
                Rep Eshoo, Anna G. [CA-14] - 6/25/2003
                Rep Evans, Lane [IL-17] - 5/7/2003
                Rep Ferguson, Mike [NJ-7] - 10/15/2003
                Rep Filner, Bob [CA-51] - 5/7/2003
                Rep Fletcher, Ernie [KY-6] - 6/25/2003
                Rep Fossella, Vito [NY-13] - 5/7/2003
                Rep Frank, Barney [MA-4] - 6/3/2003
                Rep Frost, Martin [TX-24] - 6/3/2003
                Rep Gordon, Bart [TN-6] - 6/3/2003
                Rep Green, Gene [TX-29] - 6/25/2003
                Rep Greenwood, James C. [PA-8] - 5/7/2003
                Rep Gutierrez, Luis V. [IL-4] - 10/6/2004
                Rep Hall, Ralph M. [TX-4] - 10/15/2003
                Rep Hinchey, Maurice D. [NY-22] - 7/18/2003
                Rep Houghton, Amo [NY-29] - 5/7/2003
                Rep Hoyer, Steny H. [MD-5] - 5/7/2003
                Rep Inslee, Jay [WA-1] - 6/3/2003
                Rep Jackson-Lee, Sheila [TX-18] - 6/3/2003
                Rep John, Christopher [LA-7] - 1/27/2004
                Rep Johnson, Eddie Bernice [TX-30] - 5/13/2004
                Rep Kaptur, Marcy [OH-9] - 1/27/2004
                Rep Kelly, Sue W. [NY-19] - 9/4/2003
                Rep Kildee, Dale E. [MI-5] - 6/3/2003
                Rep Lampson, Nick [TX-9] - 1/27/2004
                Rep Langevin, James R. [RI-2] - 5/7/2003
                Rep Lee, Barbara [CA-9] - 6/3/2003
                Rep Lofgren, Zoe [CA-16] - 1/27/2004
                Rep Lynch, Stephen F. [MA-9] - 9/4/2003
                Rep McDermott, Jim [WA-7] - 6/3/2003
                Rep Michaud, Michael H. [ME-2] - 6/3/2003
                Rep Miller, George [CA-7] - 6/3/2003
                Rep Nadler, Jerrold [NY-8] - 10/6/2004
                Rep Olver, John W. [MA-1] - 9/4/2003
                Rep Pallone, Frank, Jr. [NJ-6] - 9/24/2003
                Rep Price, David E. [NC-4] - 1/27/2004
                Rep Quinn, Jack [NY-27] - 5/13/2004
                Rep Rush, Bobby L. [IL-1] - 5/7/2003
                Rep Sanchez, Linda T. [CA-39] - 9/4/2003
                Rep Schakowsky, Janice D. [IL-9] - 6/3/2003
                Rep Sessions, Pete [TX-32] - 10/6/2004
                Rep Shaw, E. Clay, Jr. [FL-22] - 7/18/2003
                Rep Smith, Adam [WA-9] - 9/4/2003
                Rep Strickland, Ted [OH-6] - 5/7/2003
                Rep Terry, Lee [NE-2] - 11/20/2003
                Rep Towns, Edolphus [NY-10] - 5/7/2003
                Rep Turner, Michael R. [OH-3] - 1/27/2004
                Rep Upton, Fred [MI-6] - 7/18/2003
                Rep Walsh, James T. [NY-25] - 6/25/2003
                Rep Waxman, Henry A. [CA-30] - 5/7/2003
                Rep Weiner, Anthony D. [NY-9] - 1/27/2004
                Rep Wexler, Robert [FL-19] - 6/3/2003
                Rep Young, C. W. Bill [FL-10] -

                The identical bill S.1010 was introduced in the Senate by Senator Tom Harkin on 5/7/2003 with the following sponsors.

                Sen Bingaman, Jeff [NM] - 5/15/2003
                Sen Boxer, Barbara [CA] - 4/8/2004
                Sen Campbell, Ben Nighthorse [CO] - 5/15/2003
                Sen Clinton, Hillary Rodham [NY] - 9/22/2003
                Sen Corzine, Jon [NJ] - 5/15/2003
                Sen Daschle, Thomas A. [SD] - 9/2/2003
                Sen Dodd, Christopher J. [CT] - 6/10/2003
                Sen Edwards, John [NC] - 12/9/2003
                Sen Graham, Bob [FL] - 2/24/2004
                Sen Graham, Lindsey O. [SC] - 6/10/2003
                Sen Inouye, Daniel K. [HI] - 9/22/2004
                Sen Jeffords, James M. [VT] - 5/15/2003
                Sen Johnson, Tim [SD] - 3/22/2004
                Sen Kennedy, Edward M. [MA] - 5/7/2003
                Sen Kerry, John F. [MA] - 4/28/2004
                Sen Landrieu, Mary [LA] - 2/11/2004
                Sen Lautenberg, Frank R. [NJ] - 6/22/2004
                Sen Leahy, Patrick J. [VT] - 7/13/2004
                Sen Lieberman, Joseph I. [CT] - 7/28/2003
                Sen Lott, Trent [MS] - 9/29/2004
                Sen McCain, John [AZ] - 5/15/2003
                Sen Mikulski, Barbara A. [MD] - 6/2/2004
                Sen Murray, Patty [WA] - 2/11/2004
                Sen Nelson, E. Benjamin [NE] - 6/21/2004
                Sen Reid, Harry M. [NV] - 7/7/2003
                Sen Sarbanes, Paul S. [MD] - 6/24/2004
                Sen Schumer, Charles E. [NY] - 6/2/2004
                Sen Specter, Arlen [PA] - 5/7/2003


                  Thanks for the responses. Well said, my friends!

                  It was my understanding that the CRPA recently passed in the House unanimously, soon after CR's death,... is this not true?

                  "The essense of greatness is the perception that courage is enough." R. Waldo Emerson


                    Spaceboy, it was a misunderstanding on my part. Cheesecake had earlier posted a letter from Michael Manganiello about a bill called Research Review Act HR 5213 which Christopher Reeve supported and which the House of Representatives passed by a vote of 418-0. It was the week after Christopher's death and I wasn't paying all that much attention. I jumped to the conclusion that it was the CRPA. It was not. I apologize. I am now going through all the different postings I have made to correct this mistake. The CRPA is still in the Health Committee and has not yet come up for a vote in either the House or Senate. There was some discussion that it might come up for a vote in October. There was an article in the LA weekly which suggested that the bill did come up for a vote and then was held in the Senate (See this topic) but I have not been able to confirm this story. There is no record of the bill having come out for a vote. It seems that the LA Weekly article made a mistake and thought that the Research Review Act was the Christopher Reeve Paralysis Act. Much thanks to Steven Edwards for point this out to me. Wise.

                    [This message was edited by Wise Young on 11-08-04 at 10:19 PM.]


                      As far as the current "limited" research goes, what do we know about the potential that stem cells hold?

                      Too often republicans argue that stem cells have yet to cure anything, or anyone... that such research is all based on unsubstantiated hope.

                      "The essense of greatness is the perception that courage is enough." R. Waldo Emerson


                        Originally posted by spaceboy:

                        As far as the current "limited" research goes, what do we know about the potential that stem cells hold?

                        Too often republicans argue that stem cells have yet to cure anything, or anyone... that such research is all based on unsubstantiated hope.

                        "The essense of greatness is the perception that courage is enough." R. Waldo Emerson
                        You might want to check the featured CURE Activism thread at the top of the Cure forum.
                        This is what was posted there:

                        Important info. to rebut claims by opponents of ESC research that "ESC haven't cured anyone yet":
                        Retinal cell transplants could be one of the first applications of human embryonic stem cell technology!!!

                        WASHINGTON : US scientists on Thursday announced a breakthrough in human embryonic stem cell research they said could produce a treatment in two years for a type of blindness afflicting those over 60.

                        In an article published on the website of the Journal of Cloning and Stem Cells (JCSC), they said they had, using stem cells, cultivated retinal cells in the laboratory.

                        The epithelium pigment cells of the retina, they said, are essential to vision because they ensure the correct functioning of the eye's light receptors.

                        Deterioration of the epithelium pigment provokes a progressive destruction of the receptors which often leads to macular degeneration, a principle cause of blindness in those over 60 and for which no effective treatment exists.

                        More than 30 million people worldwide, including nine million in the United States, suffer from macular degeneration, said the article.

                        "Retinal cell transplants could be one of the first applications of human embryonic stem cell technology," said Robert Lanza, director of Advanced Cell Technology, a biotechnology firm in Worcester, Massachusetts, and co-author of the JCSC article.

                        "With the right resources, we hope to get this into the clinic in one to two years."


                        "He who votes decides nothing; he who counts the votes decides everything." - Joseph Stalin


                          Spaceboy, it is the ultimate Catch-22, isn't it. (By the way, just in case for those who are too young to have read it, Catch-22 is a novel by Joseph Heller about a world war II aviator who sought out of combat flights and met the criteria but was foiled by a little-known rule that made it so that no aviator could get out of flying combat flights).

                          In other words, they stop the research for humans and then say that there is no research to substantiate the beneficial effects of embryonic stem cell therapies for humans. In the meantime, so-called adult stem cell research has been going on for over two decades and is not restricted at all. To turn around and say that adult stem cells are better than embryonic stem cells is not fair.

                          There is evidence from animal studies that embryonic stem cells are beneficial, possibly more beneficial than adult stem cells. For example, a recent study by Harper, et al. from Johns Hopkins University showed that embryonic stem cells can replace motoneurons in rats that had been infected with a virus that kills spinal motoneurons, that these motoneurons sent axons out the ventral roots, and resulted in better function of the rats. Nothing like this has been reported for bone marrow or umbilical cord blood stem cells, to date.

                          Wouldn't it better to let scientists do the best science possible? Please understand that we should not mix up the subject of embryonic stem cells and cloning. One can have embryonic stem cell research without cloning. The current policy restricts any federal funding of research on human embryonic stem cells derived after August 9, 2001. Scientists almost unanimously agree that the 22 or so cell lines that are available from before August 9 are insufficient and unsuitable for the research that needs to be done.

                          In the meantime, the rest of the world is moving ahead with embryonic stem cell research. Private companies are allowed to do whatever they want with embryos, virtually unmonitored and therefore unregulated. Finally, New Jersey and California are now going ahead with unprecedented state funding of stem cell research. A reporter asked me this morning whether I thought state funding was desirable. I said that if I had my druthers, I would much prefer that the federal government funds the research because the research could be carried out nationwide. On the other hand, given this federal funding gap, New Jersey and California are stepping in and carrying the burden and hope of the nation in stem cell research.



                            Well, I've recently returned from my meeting with congressman Coble and must say it was an enlightening experience.

                            I was struck by how little he actually knew concerning ESC research and SCI. I suspect he is not alone. As diplomatically as possible I brought up several talking points concerning the realities of SCI, current ESC research and the effects of Bush's limited policy. The following areas drew the most affecting responses:

                            1. That only 22 approved lines are currently available, all of which are contaminated with mice genes; hence, inappropriate for human application... virtually, bringing NIH funded ESC research to a stand still. He had no idea.

                            2. The fact that no embryos are actually being saved by this policy. Furthermore, Jeff's analogy to organ transplantation made a lot a sense to him.

                            3. The extreme disparity between care funding vs. research funding (less than 1% of SCI monies are directed towards a cure, a penny on the dollar.) The math spoke for itself, ...10,000 new injuries a year, $500,000 average first year cost. His eyes about popped out of his head doing the math, ...suddenly the SCI cure seemed like a very smart investment.

                            4. Coble of course brought up that privately funded research is indeed allowed; however, he was shocked that such ESC research has practically been quarantined from working with any other NIH funded projects.

                            5. Exactly how close we are to viable SCI treatments. Specifically, 70% return of walking function in acute SC injured rats, as well as the current overseas therapies returning up to 2 levels in chronic SCI's. When I illustrated how this modest return could translate into me regaining the use of my hands and possibly full independence, it made a very strong impression.

                            Ultimately what I learned:

                            1. Politicians are human beings, ...even Republicans. Given the opportunity to do the right thing, they will likely do it. Furthermore, given an appropriate education on the current state of ESC research and its potential, modifications to the current policy will be made.

                            2. The advancement of ESC research and the SCI cure is indeed up to us. We need to collectively get off the sidelines and into the game. It is as simple as that. No one is going to do it for us. Politicians and the public need to be assured that ESC research does not involve cloning identical human beings, who may, or may not, be born without a soul. I would venture to say that most people think they are one in the same.

                            3. We need competent, professional organization and strong, non-partisan leadership. Sadly, CR is permanently retired... someone must pick up where he left off whose voice will be heard, or else bring together tens or hundreds of thousands of us to demand that research resources be made available. We need a hundred thousand wheelchair users strolling around Washington rallying for the cure, speaking with one voice.

                            4. Given the bottom-line numbers on the return of investment that an SCI treatment would bring, I believe the Senate would pass the CRPA unanimously.

                            5. We don't need a revolution; we can modify the current policy in place. Republicans need to be touched, moved, and inspired by the potential the research holds, and convinced that tweaking the current policy will allow for the possibilities to come to fruition. Improvements don't necessitate admitting mistakes. Berating and ridiculing our current leaders and their policies will get us nowhere. (Even though it's still kinda fun.)

                            Ultimately, I left the meeting feeling very positive. Congressman Coble complimented me on my eloquence and approach, and seemed genuinely appreciative of our meeting. He told me I need to speak with Burr and Dole, our senators, as the next step on the way to the top and that he would help in getting us together. Similar to any big sale, the goal is to get with the ultimate decision maker which in this case will take much time and persistence.

                            I told Rep. Coble I would follow-up with him with data validating my points. It would be nice if we had a brochure/ packet with all such info. Is any oneaware of anything like this? Maybe a CD with a short presentation?

                            "The essense of greatness is the perception that courage is enough." R. Waldo Emerson


                              Wow... sounds like a productive meeting. Glad to hear he will help you get a meeting with your senators. Very nice work. And great initiative! [img]/forum/images/smilies/smile.gif[/img]

                              ~See you at the SCIWire-used-to-be-paralyzed Reunion ~
                              ~See you at the CareCure-used-to-be-paralyzed Reunion ~