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Thread: Why the SCI Community should continue to press on the ESC issue

  1. #91
    Originally posted by Jeff:

    Wise, I'm sorry. I thought it was clear that "cure" to me means regeneration of axons and eventually neuron replacement. In that order, to help the most SCI asap. Those convinced that ESC are "the cure" are not making the distinction between regeneration and neuron replacement. They believe ESC are the cure for everything.

    So there it is. ESC show themselves better at this point to replace neurons... even while myriad other therapies are being used in combination to regenerate axons. Pretty much where I'm at right now.

    I've tried very hard to let anyone tell me how ESC will regenerate mine or anyone else's spinal cord. I don't want to be obnoxious. And I'm tired of being a pain in the ass. Let's just pretend that we are on the verge of axonal regeneration using ESC. This will finally get us all on the same page.
    I started this topic because I was concerned by the calls of some people on this forum to stop emphasizing ESC research in favor of ASC or pushing for CRPA. I disagree. Arguments are being made for the spinal cord injury community to be conciliatory on the issue of ESC research. Unfortunately, that time for conciliation has passed. In my opinion, President Bush crossed the line when he refused to reconsider his policy despite strong evidence that he was wrong about the number of ESC lines available, strong pressure from conservative members of the Republican party, and knowledge that his policy is not saving any embryo from destruction. I am not satisfied with the claims by some people that he will change his policy after the election. If he in fact does change his policy after the election, that would be equally unacceptable because it suggests that he has slowed down progress in an important area of research just for political expediency. The notion that perhaps we should trade ESC for ASC or CRPA is likewise distasteful because it suggests that President Bush is engaging in shameful political blackmail, trading the lives and suffering of a majority of people to satisfy a minority constituency.

    Jeff, I know that you don't mean to suggest the following but it is important that we do not adopt a "axons-first, neurons-second" approach to the cure. Many people with spinal cord injury have lost neurons, particularly those with lower spinal cord injuries that involve the lumbosacral gray matter. Neuronal replacement is necessary to get function back for such people. The concept that we should hold off on promising research on neuronal replacement just so that axonal regeneration can go ahead would split our community and return us to the old days of squabbling over a static pot of research dollars. We must push to enlarge the pot to accomodate all promising avenues of research.

    Our government has plenty of money to fund ESC, ASC, and CRPA. We are talking about several billion dollars compared to probably over a trillion dollars that has been spent on anti-terrorism activities in the past four years, and much more will be spent in the coming four years. Terror and suffering come in many forms, not only airplanes crashing into buildings and car bombs. When I said above that President's Bush's stem cell policy will be more costly for this nation than any other decision that he has made, I don't think that I am exaggerating. It is costly not only in terms of economy but in terms of lives. Less than 10,000 Americans have died due to terrorism related activities in the past four years. Many many more have died because we have not invested adequately into biomedical research in the past four years.

    Wise.

    [This message was edited by Wise Young on 07-23-04 at 10:56 AM.]

  2. #92
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    Originally posted by chick:

    There _is_ fear and trepidation - fear that therapies that will heal and potentially cure SCI will be delayed unnecessarily, thus being trepid about more aggressively pursuing avenues that are controversial (despite unknown potentialities of ESC)...... I understand you are not advocating giving up on ESC research, maybe just laying off the issue a bit for now in pursuit of less politically contentious issues and maybe tapping into research that has _already_ been done and continues to be done with less "obstacles" in the way.
    Very well summarized Chick!

    Rather than the endless Quasie scientific justification for the above point, let's look at the current situation ( political climate and advocacy environment created by politicians, scientists and "patient" groups )and the most likely outcome of each of the two options in terms of advocacy:

    As I have said before, pushing for ASCR funding and pushing for ESCR funding are not mutually exclusive.

    If anything, at this point in time, it would seem to me that the more push there is for ESCR funding the more we are benefiting increased ASCR funding. Simply because the strategy of people like Brownback is to show compassion by giving even more priority to ASCR funding in hopes of showing major results quickly.

    And in return, Brownback's hope is that the positive results of increased ASCR funding can take ESCR off the table as quickly and completely as possible.

    Thus the reality is that:

    1. pushing for ESCR ( including ALL SCR...... since ALL Stem Cell Research = Cures For ALL) at this point in time, will carry significantly increased benefits for ASCR funding while keeping ESCR in the spotlight ready for action by the federal government.

    Yet,

    2. giving priority to pushing only ASCR for now, may benefit ASCR to a lesser degree and delay ESCR further ( leaving out many of the 128 million americans, including a sizeable percentage of sci, waiting to be cured )

    "We have lost so much time already" - Nancy Reagan

    [This message was edited by Faye on 07-23-04 at 10:25 AM.]

    [This message was edited by Faye on 07-23-04 at 10:40 AM.]

  3. #93
    Okay. Let's try it this way... get hard numbers.

    Wise, what percentage of our time do you think we should spend our advocacy efforts on? Break it down into a set of three: ESC related advocacy, non-ESC related advocacy [including non-ESC based neuron replacement and the CRPA], and other [whatever we choose, which may overlap with one of the previous two].

    ...and, before Bush "crossed the line," would you have said the same?

    My own personal choices would be 20/60/20. President Bush did cross the line by not reconsidering his decision. The line he crossed made it clear that he won't change his policy before the election -- if at all. I'm spending time out of my day to help get the California Stem Cell Initiative passed, so I am supporting it and trying to help out [part of my "other"]. I just think that the CRPA should receive at least equal attention and focus [as ESC advocacy] from the spinal cord injury community.

    -Steven
    ...if i knew all about this one thing, wouldn't that be something

  4. #94
    Banned Faye's Avatar
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    Originally posted by Wise Young:

    I started this topic because I was concerned by the calls of some people on this forum to stop emphasizing ESC research in favor of ASC or pushing for CRPA. I disagree. Arguments are being made for the spinal cord injury community to be conciliatory on the issue of ESC research. Unfortunately, that time for conciliation has passed.

    Our government has plenty of money to fund ESC, ASC, and CRPA. We are talking about several billion dollars compared to probably over a trillion dollars that has been spent on anti-terrorism activities in the past four years, and much more will be spent in the coming four years. Terror and suffering come in many forms, not only airplanes crashing into buildings and car bombs.

    When I said above that President's Bush's stem cell policy will be more costly for this nation than any other decision that he has made, I don't think that I am exaggerating. It is costly not only in terms of economy but in terms of lives. Less than 10,000 Americans have died due to terrorism related activities in the past four years. Many many more have died because we have not invested adequately into biomedical research in the past four years.

    Wise.
    So Steven, no need to quantify percentages of time spent on each type of advocacy. All should be done simultaneously as opportunities arise.

    Case in point: the Senate Commerce, Science and Transportation Committee hearing on adults stem cells offered the opportunity to taut all three, ASCR, CRPF and ESCR.

    Remember there is enough money for all.

    Leaving ESCR out of the equation at such an opportunity to appease the minority religious right is immoral and not justifyable on scientific or even political basis anymore.

    "We have lost so much time already" - Nancy Reagan

  5. #95
    Did you mention the CRPA when you shook hands with Kerry? link

    -Steven
    ...if i knew all about this one thing, wouldn't that be something

  6. #96
    Banned Faye's Avatar
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    Originally posted by Steven Edwards:

    Did you mention the CRPA when you shook hands with Kerry?
    -Steven
    Not a good example Steven: I didn't have the "podium".

    With hundreds of people clamoring to say "Hi" to Kerry and to shake his hand, I had but a second to say: "WE NEED STEM CELLS!!"

    Even the limited time and these few words made a desired impact!

    You can be assured that if I had just a few more seconds, I would have also emphasized CRPF needs.

    "We have lost so much time already" - Nancy Reagan

  7. #97
    You could have said "We need a cure for paralysis!" or something similar. "Paralysis research needs more funding!" Lots of things.

    You played your hand. If I get the chance to meet Kerry -- even briefly -- I'll play mine.

    -Steven
    ...if i knew all about this one thing, wouldn't that be something

  8. #98
    Steven,

    You are of course free to allocate your time to whatever priority that you want. But, we should not be critical of priorities that others choose. Like you, I have been disappointed in the lack of interest and advocacy for CRPA on these forums. This is not for the lack of trying. Please do bring up the issue of clinical trials.

    I am very proud of the testimony by both Susan Fajt and Laura Dominguez in front of Senate Commerce Panel because they delivered a very clear message that it is a shame that Americans have to go overseas for clinical trials, while they did not back down on the issue of embryonic stem cell research. That message is a victory for the spinal cord injury community.

    The arguments that we should prioritize ESC and ASC now simply does not make sense politically, scientifically, or ethically.
    1. Politically, Congress is very close to reversing President Bush's irrational policy on embryonic stem cell research. A majority of the Senate and close to a majority of the House of Representatives have signed letters to the President. This is astonishing considering that it is an election year and the both houses of Congress have a Republican majority.
    2. Scientifically, there is currently insufficient data to say that ESC or ASC is better. There is certainly nothing that would support lowering the priority of ESC research and ASC research is already receiving considerable support.
    3. Ethically, the President's policy does not save any embryos from destruction. That is what is so puzzling about the whole situation. If the goal is to save embryos, the policy is an unmitigated failure.

    Wise.

  9. #99
    I too am proud of the testimonies given by Susan and Laura. Very proud of the jobs they did.

    Regarding the percentages, I asked your opinion out of the respect that I have for you. If you feel that my advocacy would be more productive with the percentages adjusted, I would definitely take your words under consideration.

    I may have been a bit overzealous in my attempts to put more focus on the CRPA. As I have found fault in others for being overzealous, so too should I find fault with myself. For my zeal, I would like to offer an apology.

    Faye, Debbie, this apology is directed to you. I do respect what the two of you are attempting to do, as I hope you both respect what I am trying to do. We all share a common goal and have given lip service to supporting each other's respective favored paths. Would you two agree to put everything behind us and start forging a path forward -- together -- where we don't question each other's intent or try to decapitate each other's efforts? Trust that we -- everyone on CareCure -- are all working towards the greater good and that there is a proper time and a proper place for everything?

    For clarification, I admit that I have made errors in this whole situation. However, let's move forward from here. What do you say?

    -Steven
    ...if i knew all about this one thing, wouldn't that be something

  10. #100
    Thanks, Steven. Wise.

  11. #101
    Steven,

    I'm with you, behind you, and for your efforts 100%. For me I know all of our passion comes from shear desperation in finding a cure. No apology needed but thanks for being so gracious.
    Deb

  12. #102
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    Sure Steven, I'm with you also!!!

    Let's go full steam ahead on all four fronts:
    1. ASCR
    2. ESCR
    3. CRPF
    4. other research supportive to cell transplants

    And unite on all four fronts not to exclude any. Nobody should fear being left behind if all options are pursued fully!

    I agree with Deb, no need to apologize. We all had the common goal of curative treatments as soon as possible, and the time is right to push on all four aspects for developing and implementing curative treatments asap in the US.

    Thank you Steven!

    "We have lost so much time already" - Nancy Reagan

  13. #103
    I have often watched debates, some never end and some are settled. My point is that after the debate is settled people sit back and wait for a new debate. Sometimes the only interest was the debate itself, just for the sake of debating. This debate seems to have been settled and I hope it is not put to rest, but rather stirs up some support for helping advocate for spinal cord injury research. I offer my time to help with this advocacy. I am truly in acceptance of where this debate has taken us. I know some key people involved in this advocacy have a means of contacting me and I hope they do. I can write, and forward letters, make telephone calls, etc.

  14. #104
    BigB,

    Contact Faye or me - we could use your enthusiasm on our team.

    Deb

  15. #105
    Debbie, I will. And Steven thanks for ending the debate! I admire you, and being we can all work together towards a goal of better treatments for sci, I will not let this opportunity pass and will become more active in doing whatever I can to insure that better treatments are available.

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