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Thread: What do you have to lose?

  1. #101
    If Dr. Young takes a wild guess, offers up a date for us to expect an effective therapy, many will rip his jugular if it doesn't materialize on that date. The date depends on a lot of variables...funding, the researchers making good educated guesses about which therapies are most likely to work then pursuing that, even luck. If it involves ESC it may depend on the whims of the US Congress (God forbid!)

    Having a date in hand could provide the opposite effect of motivation-people might decide it's a done deal, this job is done, nothing to do but wait, time to go to the bar.

    Personally I couldn't trust a researcher that had a date for even a partial cure. The only way they could do that is if they already had the therapy and were withholding it. If Wise offers up a date to provide us motivation and enthusiasm, he's condescending, and worse than that, he's lying.

    To me, he's doing the right thing in giving us the facts, and not a speculative date. We're not little children. We know nothing is guaranteed and certainly not on a given date. We may not be cured in our lifetime, although I certainly would like to be. If we aren't, it would be nice to have pushed things forward for the future. Since we're the ones that truly understand the ramifications of SCI it makes sense that we be the ones to try...even without a date in hand.

    Forgive me if I misunderstand where you're going with this pursuit of the date thing.

  2. #102
    Foolish Old,

    I sincerely hope that it is just semantics. I have read and re-read your posts but I don't see you voicing support for clinical trial networks or increasing NIH funding for peer-reviewed spinal cord injury research. While you may say that you support “everything“ that has any chance of yielding a cure, that is not the same as saying that you support the Christopher and Dana Reeve Paralysis Act (CDRPA) and increasing NIH SCI research (NIH SCIR). Do you or don't you support these? If you do, let's stop arguing and let's work together on getting them to happen. If you don't, please say so and help me to understand why not. For all your claimed support of SCI research, you have been giving a lot of reasons for not supporting CDRPA and NIH SCIR.

    Let's take your statement that it is 'easier to garnish enthusiasm for human clinical trials than for trial infrastructure. Concepts such as “networks“ and “centers“ do not hold the rallying power inherent in a pronouncement that a specific treatment will be tried on real humans at a time certain.' While you offer this statement as a reflection on others, is it true for you? Do these concepts not hold any rallying power for you? Do you think that funding CDRPA and NIH SCIR is like building the race-track and not the real race? If so, then we have something substantial to discuss.

    I am sorry if I seem combative to you but I have been trying to encourage the SCI community to support research for three decades. Many in the community give lip service to research but, when the chips are down, they have obstructed the research. Probably the most dramatic example of this was in 1996 when Christopher Reeve was invited to speak to the Democratic Convention. Many people in wheelchairs protested and forced Al Gore to call Christopher to ask him to de-emphasize the cure in his speech. If you do not recall, please allow me to remind you with the following articles from those times.
    http://www.raggededgemagazine.com/archive/p16story.htm
    http://www.independentliving.org/docs3/brown96c.html

    Christopher Reeve was probably taken aback by some of the criticism of him but I don't think that he was prepared for the storm of criticism that followed his Superbowl 2000 Nuveen ad. John Williams wrote in Business Week:
    http://www.businessweek.com/bwdaily/...0/nf00209d.htm
    Christopher Reeve's Super Bowl Ad Scored a Touchdown
    But it has provoked a surprisingly negative reaction among disabled groups. Why?

    I have never understood the animosity that many of my friends with disabilities show toward Christopher Reeve. A talented actor, writer, director, and producer, Reeve suffered a severely damaged spinal cord in a horseriding accident several years ago. Today, most of the world knows he's a quadriplegic. He never asked to be severely limited in what he can do physically. He never asked for the attention his disability automatically guaranteed him. And I'm sure he never asked to become a universal role model, symbol, and leader in the struggle to find a cure for spinal-cord injuries and other disabling diseases.

    By virtue of his fame and personality, Reeve's role as a spokesman for the disabled community was thrust upon him. He could easily have become a recluse and said, “No, I do not want that role.“ He did not.

    Having met him several times, I know Reeve is a fighter. He wants to walk again. He wants to ride again. He wants to hold his wife and children in his arms. He wants to work. He wants to be independent. These are his dreams, the same as those of many other disabled people, and we should respect them and encourage him to use every resource at his command -- his fame, his personality, his friends -- to achieve his dream and give hope to others with spinal-cord injures.

    SECOND THOUGHTS. But a great deal of controversy and anger has surrounded the actor, much of it coming from people with disabilities. The latest example: Reeve's appearance in a Super Bowl ad for Nuveen, an investment-management company, in which the paralyzed actor seems to stand up and walk across a stage to present an award.

    I must admit, at first I, too, was upset. How phony, I thought. (The ad was a computer simulation of Reeve's head on the body of a man in a tuxedo.) Why would Reeve do this, I thought?

    Later, when I saw the ad again, I had second thoughts. This was really a Big Idea, an emotional moment packaged with a thought-provoking message -- the importance of hope, the importance of investing in the future and in technology that could open the floodgates of opportunity for disabled people worldwide.

    “MOTIVATING VISION.“ I asked Reeve why he agreed to do the ad. “It is a motivating vision of something that can actually happen,“ he said via a spokesman. “Leading scientists around the world all agree that it is only a question of money and time before people who have suffered from spinal-cord injuries will be able to recover. And so in order to help people visualize what the future will bring, I thought this ad would be very helpful.

    “Rather than just imagining a spinal-cord victim walking in the future, I thought it would be even more powerful to see it actually happening. The response I got from people all over the world, both the general public and people who suffer like me from spinal-cord injuries, has been overwhelmingly positive,“ he said, through the spokesman.

    But a backlash is building. Columnist Dr. Charles Krauthammer -- whose own spinal cord was damaged in a diving accident when he was young -- denounced the ad in his syndicated column on Feb. 1 as “disgracefully misleading.“ Krauthammer, who uses a wheelchair, said Reeve was trying to foist his false hopes upon others. “His propaganda undermines those -- particularly the young and newly injured -- who are struggling to face reality, master it, and make a life for themselves from their wheelchairs.“
    The CDRPA and NIH funding for SCI research represent the scientific approach to the cure of spinal cord injury. What is the reason there is such a dearth of support for scientific pursuit of a cure for spinal cord injury? Is it because people don't believe that there is a cure? I don't think so, at least for those people who willing to go to the ends of the earth (literally) on the basis of false hope provided by charlatans. Are not people who are going to fly-by-night clinics overseas proclaiming their hope in the cure but their lack of faith in the scientific pursuit of the cure? Is it because people don't believe in or trust science? It is truly astonishing for me to read what people like Charles Krauthammer writes about cure for spinal cord injury. This man is spinal-injured and a graduate of Harvard Medical School. Yet, according to him, it is false hope to tell people that science will yield a cure to spinal cord injury. Do people really think that it is false hope to believe that science will provide the cure?

    What I hear many people voice is support for the Cure but not scientific pursuit of the cure.

    Wise.
    Last edited by Wise Young; 06-11-2007 at 12:24 PM.

  3. #103
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by betheny
    If Dr. Young takes a wild guess, offers up a date for us to expect an effective therapy, many will rip his jugular if it doesn't materialize on that date. The date depends on a lot of variables...funding, the researchers making good educated guesses about which therapies are most likely to work then pursuing that, even luck. If it involves ESC it may depend on the whims of the US Congress (God forbid!)

    Having a date in hand could provide the opposite effect of motivation-people might decide it's a done deal, this job is done, nothing to do but wait, time to go to the bar.

    Personally I couldn't trust a researcher that had a date for even a partial cure. The only way they could do that is if they already had the therapy and were withholding it. If Wise offers up a date to provide us motivation and enthusiasm, he's condescending, and worse than that, he's lying.

    To me, he's doing the right thing in giving us the facts, and not a speculative date. We're not little children. We know nothing is guaranteed and certainly not on a given date. We may not be cured in our lifetime, although I certainly would like to be. If we aren't, it would be nice to have pushed things forward for the future. Since we're the ones that truly understand the ramifications of SCI it makes sense that we be the ones to try...even without a date in hand.

    Forgive me if I misunderstand where you're going with this pursuit of the date thing.
    First, I never suggested that Dr. Young should do anything. What I said is that when someone launches a project having a clearly stated immediate goal of some return in a human, it will be easier to gain support.

    Even a projected date for the start of a specific human trial would generate enthusiasm. I also stated that this might not be possible at this time. It seems that stated possibility offended. So, if saying that it would be good to project a date is wrong, and saying it might not be possible is wrong... sounds like anything other than unquestioning support for a clinical trial network is wrong? See, I'm wanting a discussion, and I'm starting to think I checked the box requesting an argument. Consensus is built by people thinking that their ideas have, at the least, been understood and fairly considered. I don't come to this with the baggage that some have alluded to regarding past wars with people now banned from here, but I think I may be opening old wounds. That's okay, y'all are doing a heck of a job of developing an effective grass roots movement. Stay the course.

    Nothing I wrote placed any burden to produce a therapy or date, or criticism for not doing so on Dr. Young.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  4. #104
    No, I wasn't offended, I couldn't see what you were getting at. I couldn't picture you with that question that keeps coming up "Tell us WHEN." (The when question drives me crazy.) I always ignore it but coming from you I thought I must be misunderstanding. Because if they knew when, they'd know how, and we'd be dancing!

    TY about the grassroots movement.

  5. #105
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by Foolish Old
    Doctor Young,

    I agree that language seems to be the chief cause of any perceived disagreement we have regarding cure.

    No, I don't BELIEVE that clinical trials will produce a cure. Nor do I BELIEVE that increased NIH funding will get us walking. But I sure as hell HOPE that both will produce such benefit to people with paralysis. That is why I strongly support and advocate for both of these things.
    Dr Young, I'm starting to think that you don't want to understand what I am saying. I see nothing equivocal or ambiguous in my previous statement (quoted above) regarding my support of clinical trials and increased NIH funding. If I opposed CDRPA, my opposition would not have to be inferred, it would be clearly stated. Yes, I do perceive you as being more combative than convincing in this series of posts. Yes, I do support and advocate for increased NIH funding and passage of CDRPA. No, I am not as excited about trial infrastructure as I would be about actual human trials. Yes, I do understand that infrastructure is necessary. And yes, I believe that the scientific community has done a mediocre job of communicating with the lay public and congress. If that makes you believe me to be an enemy of a scientific cure and tries your patience, unity of purpose will be harder to achieve than I thought.
    Last edited by Foolish Old; 06-11-2007 at 03:09 PM.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  6. #106
    How is it one or a few lonely voices like Krauthammer can be so loud?

    I think it's because the numbers are low when dealing with SCI. Lower by a long ways from Cancer, AIDS, or e even heart disease. And the foundations are many. Spread out all over the place yet..unable to fund clinical trials.

    MD and ALS joined forces for exposure reasons and monetary reasons.

    ALL the foundations devoted to SCI CURE research IMO should form ONE national foundation. Make the numbers of the supporter really count. I thought the Reeve foundation might inspire this. I was wrong.

    AND scientists are not innocent either. The word collaborative really needs to be put into use.
    There are so many duplications of the same research being done it's another horse choker. There needs to be some standards put on it. If a therapy is replicated three times..that should really be enough.
    The way it is the grant money is like singing the same song over and over again. A damn continuous loop.

    AND when at a time clinical trials are so very needed
    we get all this new buildings chatter. Many of the greatest discoveries of all time were done in basements and buildings that already existed. IF scientists actually only can do their work in opulence..where is their devotion.

    IF treatments are found by the collaboration of the scientists that are devoted to this..there is a legacy of honor that ALL will share. Sure maybe one or two might steal some of the show. And in their honor NEW buildings will be built. BUT ALL will share the legacy of an accomplishment that was considered an impossible dream. Something you just can't take to the bank. Something that will live on long after ALL those involved are gone.

    The funking funding being fed the NIH..is deplorable.
    Every human being in this country gains better health thru the funding of the NIH. AND every taxpayer should be throwing it at the government bigtime. This should be one arm of government where the skies the limit.
    It means we the taxpayer MUST use our voices and tell our reps. and each other to get with it.
    Life isn't about getting thru the storm but learning to dance in the rain.

  7. #107
    Quote Originally Posted by Foolish Old
    Dr Young, I'm starting to think that you don't want to understand what I am saying. I see nothing equivocal or ambiguous in my previous statement (quoted above) regarding my support of clinical trials and increased NIH funding. If I opposed CDRPA, my opposition would not have to be inferred, it would be clearly stated. Yes, I do perceive you as being more combative than convincing in this series of posts. Yes, I do support and advocate for increased NIH funding and passage of CDRPA. No, I am not as excited about trial infrastructure as I would be about actual human trials. Yes, I do understand that infrastructure is necessary. And yes, I believe that the scientific community has done a mediocre job of communicating with the lay public and congress. If that makes you believe me to be an enemy of a scientific cure and tries your patience, unity of purpose will be harder to achieve than I thought.
    Good. I am glad that you support CDRPA and NIH SCIR. Npw, about the clinical network, why are you not so excited about it? By the way, the funds will not be used for buildings, etc. but for establishing the network which is comprised of people. I was on the NICHD Council (the National Institute of Child Health and Development) when CRPA was first proposed. At that time, NICHD and NINDS (the Neurological Institute) were going to share the responsibility of running the network. it was going to be six Christopher Reeve Paralysis Centers which would serve a regional hub for local networks. NICHD has a lot of experience with networks. NINDS already runs networks for Parkinson's disease, traumatic brain injury, multiple sclerosis, and other conditions. Presumably the money will be used to establish clinical trial teams and to establish standing clinical trials, recruitment of people with different conditions, training everybody to use the same standards, establishing communications, and reviewing the therapies that the network would test.

    What a network does is to set up the centers so that a company or laboratory can come to the network with a proposed therapy and the network can do the trial without the company or laboratory having to spend the time and money setting up the multicenter trial. This is what I have spent the last 3 years doing for the ChinaSCINet. If a company wanted to do this, it would have taken them longer than 3 years and much more money. A company may be able to put a therapy through phase 1 and 2 for several million dollars instead of $10-20 million. It might be able to do a phase 3 pivotal trial for $20 million instead of $100 million. That is why a network is so useful. It lowers the cost of clinical trials and reduces the time required for therapies to get into trial.

    Wise.

  8. #108
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by Wise Young
    Good. I am glad that you support CDRPA and NIH SCIR. Npw, about the clinical network, why are you not so excited about it? By the way, the funds will not be used for buildings, etc. but for establishing the network which is comprised of people. I was on the NICHD Council (the National Institute of Child Health and Development) when CRPA was first proposed. At that time, NICHD and NINDS (the Neurological Institute) were going to share the responsibility of running the network. it was going to be six Christopher Reeve Paralysis Centers which would serve a regional hub for local networks. NICHD has a lot of experience with networks. NINDS already runs networks for Parkinson's disease, traumatic brain injury, multiple sclerosis, and other conditions. Presumably the money will be used to establish clinical trial teams and to establish standing clinical trials, recruitment of people with different conditions, training everybody to use the same standards, establishing communications, and reviewing the therapies that the network would test.

    What a network does is to set up the centers so that a company or laboratory can come to the network with a proposed therapy and the network can do the trial without the company or laboratory having to spend the time and money setting up the multicenter trial. This is what I have spent the last 3 years doing for the ChinaSCINet. If a company wanted to do this, it would have taken them longer than 3 years and much more money. A company may be able to put a therapy through phase 1 and 2 for several million dollars instead of $10-20 million. It might be able to do a phase 3 pivotal trial for $20 million instead of $100 million. That is why a network is so useful. It lowers the cost of clinical trials and reduces the time required for therapies to get into trial.

    Wise.
    Because the network just makes trials possible. It is a means to an end. The best network imaginable cannot help us in the absence of a proposed and funded trial. I am supportive of a network. I will be excited when I learn of done deal commitments to utilize such a network in human trials. In the interim, the more that the details of such a network are fleshed out, the more enthusiasm and support will build for this concept. I wonder how many people besides myself learned from your last post that the cost of buildings would not enter into the cost of this network? Or do you mean just that no new buildings will be created? Your post talks a little about the suggested network structure when CRPA was first proposed, can you tell us more about the current proposal?
    Last edited by Foolish Old; 06-11-2007 at 04:36 PM.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  9. #109
    Quote Originally Posted by Foolish Old
    Because the network just makes trials possible. It is a means to an end. The best network imaginable cannot help us in the absence of a proposed and funded trial. I am supportive of a network. I will be excited when I learn of done deal commitments to utilize such a network in human trials. In the interim, the more that the details of such a network are fleshed out, the more enthusiasm and support will build for this concept. I wonder how many people besides myself learned from your last post that the cost of buildings would not enter into the cost of this network? Or do you mean just that no new buildings will be created? Your post talks a little about the suggested network structure when CRPA was first proposed, can you tell us more about the current proposal?
    The original legislation had no money associated with it. On the second rally, the sponsors inserted $100 million. In my opinion, this is enough to start and sustain the network for three years but perhaps enough to kickstart some phase 1 and 2 trials, but not enough to run phase 3 clinical trials. The legislation allocates the funds and directs the NIH to create the network centers. The work is overseen by advisory boards.

    Wise.

  10. #110
    Senior Member KIM's Avatar
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    So. What do you have to lose? and What do you have to win? To my knowledge nothing yet

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