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Thread: A fervent wish for the coming year

  1. #21
    Super Moderator Sue Pendleton's Avatar
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    CJO, I did not mean to make you appear an idiot. My apologies if It looked or sounded that way. I do believe this is a simple question that we must ask of our doctors who treat us. What will it take or them to treat our paralysis, our deformity? If it takes an inservice of the hospital's doctors who deal with SCI and done by a layman patient then that's where we have to start.

    As for OEGs, I think we will see human work in this area in the next year or so. Yes, in the USA.

    And DA? Everytime a clinical trial is mentioned at Hopkins so is the death of a healthy test subject who should have gone in for treatment when she began experiencing side effects. She waited two days and died. Now one of the top trials hospitals in the US has slowed human research to a crawl in all areas including AIDS.

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  2. #22
    Senior Member DA's Avatar
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    sue...what else did you expect from 100 years for sci breakthrough hopkins.
    that boy wasn't the first to die and wont be the last. i heard aids vaccine will is ahead of schedule. doctors are telling cancer patiences to goal now is to stay alive for soon to be cure. this dont sound like passive punked research. again, STOP WITH THE EXCUSES. let the sci reseachers and clincians make up their own BS excuses.

    the fact is we need more famous to become paralyzed OR researcher/clincians whom stop seeing us as happy gimps and stop copying our disability by doing paralyzed research. thats research that goes nowhere. no pun.

    the usa lead the world in sci research 3 years ago, now the usa is far behind. its because of greed and cowardness. AND YOU CAN BELIEVE THAT.

  3. #23
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    DA - in response to your most recent, and previous, post be-moaning the pace at which SCI research is coming up with a tried and tested cure.

    ".... the fact is we need more famous to become paralyzed OR researcher/clincians whom stop seeing us as happy gimps and stop copying our disability by doing paralyzed research."

    Researchers do not see us as "happy gimps". I they saw us as satisfied with being paralysed they would not devote so much effort to finding a way of reversing our paralysis. You frequently claim that they are not putting in any effort to finding a cure, stating that a cure is the last thing they want, as it would make them jobless. I find this claim laughable when one considers the amount of progress that has been made over the last decade or so. Our frustration at the current pace of progress is testament to the feeling that we are so close to the finish line; a feeling given credence as a result of the huge effort that has been put in by a huge number of the people that you deride as slackers. We all want a sprint finish but this is a relay marathon race and we cannot afford to drop the baton on the home straight; if we do we lose a large amount of time going backwards to pick it up or, worse, the whole team gets disqualified.

    "...... i heard AIDS vaccine will is ahead of schedule doctors are telling cancer patiences to goal now is to stay alive for soon to be cure"

    This is true and bears a remarkable similarity to what researchers are telling the SCI community. We are constantly being bombarded with news of more progress towards the day we are cured. This is despite the fact that, unlike cancer, a treatment for SCI has only begun to be seen as a realistic objective very recently. AIDS may be attracting more funding and urgency than SCI and on my selfish days I feel that this is unjust. However I recognise that SCI is not fatal in the same way as AIDS and that in parts of Southern Africa, for example, twenty five percent of the population is HIV positive and, when looked at like this, this justifies a massive effort being put into AIDS research that, like SCI treatments, is frustratingly close to producing real results, but not quite there. This does not make me a cure hater (a cliché phrase that is used frequently and thoughtlessly on this forum) it merely means that I recognise the SCI community are not the only people who need time and money spent on them.

    ".... the USA lead the world in sci research 3 years ago, now the USA is far behind. its because of greed and cowardness. AND YOU CAN BELIEVE THAT."

    The USA has much good research going on in it. The West's litigation culture may make it more difficult for American clinicians to instigate clinical trials than in China for example. Does it matter who is in the lead in applying animal results to human trials? What matters is that progress is being made in many places in the world and the fact that we know this is because research news is being shared and used to catalyse action across the globe. There may be clinical trials happening in countries that are not happening in the US but this does not mean that you can not benefit from them. I live in the U.K but I am not upset because OEG trials are happening elsewhere, I am just excited that they are happening.

    Like you I hate being paralysed and feel that the cure can not arrive a moment too soon. Research follows a protocol that makes the transition from laboratory rat to treatments being available frustratingly slow and, like you, I wish it were otherwise. I do not however accept that SCI is the only group of people that would suffer if a potential therapy went avoidably wrong in trial because it was rushed from rat to human guinea-pig without sufficient attention being paid to potential risk. As a result every reasonable effort must be made to ensure clinical trials are a success when they happen. Right now this feels like it is preventing progress but in the long run it may well be the quickest route. Clinical trials will happen within the foreseeable future and when they do they will move more swiftly from trial to treatment because attention to detail now means that they will work when they arrive. If clinical trials go wrong we will have taken three steps backward instead of one giant step forward.

  4. #24
    Senior Member DA's Avatar
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    another post full of excuses. weak pathetic excuses. if all research followed the same path, i wouldn't have an arguement. their is more than 1 standard and sci for years have fallen under the highest impossible to succeed path. let g.w. bush daughter become vent quad or any other high power person become paralyzed, all these speed bumps you all defend with these bs excuses will vanish. therefore i repeat again....2 years for gleevic versus 14 years and still counting for 4-ap. 2 DAMN STANDARDS.

  5. #25
    Senior Member bill1938's Avatar
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    Politicians, commercial greed, FDA, lack of urgency by society

    Political self interest, religions demands, commercial greed, FDA, lack of urgency by society, these are some of the reasons we are not cured. I agree with Da.
    I have one of the greatest positive attitude's about most things but I
    now believe A cure in the U.S. will be delayed until all these interests have their ducks in a row. I have been supporting cure research since 1980 and I saw the same misguided optimism twenty years ago. I believe the best chance for cure is outside the U.S. The SCI community needs lobbys to speak for their interest.Dr Young and C. Reeve are Godsends but we need more. We need power and money to help our cause and we should try to hold researchers accountable for the research money we give them.We allow politics, religious groups,greed etc, to stop and stall research we need for life and breath.

    I hope I am totally wrong about a cure in the U.S and I wish everyone a healthy and joyous New Year.

  6. #26
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    To Adrian and all others that worship clinical trials - I don't believe what Dr. Huang is doing should be considered a Phase 1 clinical trial. His work is helping people. It doesn't seem to me that he is trying to prove the safety of his technique, but rather to restore function to his patients. A small group with close followup studies would constitute a clinical trial to me, but this guy is doing 6-8 surgeries a week. Granted, his technique is not perfect, but he's helping people now. He's not wasting time "hiding behind excuses."

    When I first started reading this forum, I thought DA was a bit of a radical. I laughed my ass off at some of his posts and thought maybe he should tone it down a bit. The more I read, the more I realize that he knows his shit and we need his voice to be heard.

  7. #27
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    I do think researchers see us as "happy gimps." Just a few days ago I went for my yearly check-up at the VA. They have this survey which asks if I think my health is is excellent, good, poor. I checked "poor". They also ask if I can do all, some, or few of the things I want to do. I checked "few".

    In short, those answers were so unusual, that they had a psychiatrist sit through my check-up!!

  8. #28
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    GLEEVIC - WHAT CAN THE SCI COMMUNITY LEARN FROM IT?

    The rapid approval of Gleevic has been cited as evidence that spinal cord treatments are being inhibited by the lack of drive from the SCI research community. I had not previously heard of Gleevic so I did some research and the following summarises my findings.

    I too wish that effective treatments for SCI would arrive with the speed with which Gleevic received approval, however the remarkably quick FDA approval of Gleevic is all the more remarkable because it is not an effective drug.

    In May 2001, the FDA rapidly approved Gleevic as a treatment for the advanced stages of CML. It was later approved as a second-line treatment for patients in the earliest stage of CML after they no longer responded to standard interferon-alpha therapy.
    As the manufacturer, Novartis Pharmaceutical Corporation, readily admitted:
    "Accelerated approval of Gleevic was based on time to progression as the primary surrogate endpoint. Approval under these regulations requires further adequate and well-controlled studies to verify and describe clinical benefit. There are no controlled trials demonstrating a clinical benefit, such as improvement in disease-related symptoms or increased survival." .........just four out of 38 patients in a blast crisis had a complete hematologic remission while 17 had a decrease in blasts in the marrow to 15 percent or less. "Unfortunately," the NCI summarizes, "these responses have not been durable." In other words, cancer cells often develop resistance to this drug, as they commonly do to chemotherapy. Given its lack of durability, Gleevic cannot be deemed "effective" in the advanced phase of the disease, and there is no reason at this moment to conclude that Gleevic increases survival in CML.
    Serious and severe side effects were also reported with Gleevic, including liver problems and low levels of certain blood cells. According to a company document, 64 percent of those in the blast crisis experienced neutropenia, a serious or severe deficiency in white blood cells called neutrophils; 63 percent had another kind of white blood cell destruction, thrombocytopenia; and 52 percent developed anemia of the red blood cells.
    Gleevic was discontinued due to side effects in 5 percent of those in blast crisis. The company also states that "there are no long-term safety data for Gleevec available."

    So if a treatment which had not proven effective in clinical trials was approved so rapidly why did it get FDA approval, and why can't equally effective/ineffective SCI treatments be approved?

    FDA approval was a generous present for Novartis. Online pharmacies have "discounted" each 100-milligram capsule to around $17. At a dose of 600mg per day, this works out to $100 per day, or around $36,500 per year. If every CML patient in the US were to take the drug, this would represent around $1.46 billion in Gleevic sales for Novartis. Not bad for a drug whose effects on survival remain unproven. Drugs that are sponsored by big pharmaceutical companies are given first consideration and accelerated approval, then are praised by an alliance of company publicists, enthusiastic scientists, government officials and compliant media.
    It is no wonder that neither the NCI nor the FDA has ever validated or approved an alternative, or nontoxic, method of treating cancer. Yet, at the same time, we have the bizarre phenomenon of huge companies being allowed to market toxic drugs in the complete absence of any proof of life extension!

    In my opinion treatments for SCI are not being fast tracked as they are not profitable for pharmaceutical giants, not because the researchers are putting no effort into their work. I fully agree that progress from laboratory to patient should, and could, be faster. I am not making excuses for the system but I do not believe the slow pace of progress can be blamed on a lack of effort by scientists. They are working hard with the limited resources available. They do not, as you point out, have the mass appeal of Supermen nor the financial kudos of Novartis so they must work within the constraints imposed on them by an unfair system that accelerates ineffective treatments like Gleevic (which cure bank balances but not cancer) whilst forcing unprofitable science to jump through a series of pointless hoops.
    I don't want to wait one second longer for a cure than I have to. I am prepared to wait for an effective one rather than putting a significant proportion of limited resources into approving one that may be ineffective. I may get treated more quickly if I opt for the second choice but if the treatment is ineffective what advantage is it to me?
    It would be fantastic if more big names would put their weight behind the SCI lobby and treatments that have already been shown to have more beneficial effects than gleevic has been shown to have for cancer patients. It would be excellent if a multi-national company could see a profit to be made by fast-tracking clinical trials and an effective treatment for paralysis, in the USA or any other country.
    If Gleevic proves to be the answer for CML sufferers that is fantastic but the available data does not support this hypothesis. I fail to see how Gleevic can be used as an example of how other groups receive better treatment than SCI patients in terms of access to an effective cure. The lesson we can learn from gleevic, and this is where I agree with DA and others, is that we have treatments for SCI available that have as much proven benefit as gleevic has for CML, if not more. We therefore need to persuade pharmacutical companies that it would be profitable for them to market those treatments. A company that stands to make money is far more persuasive to any government than getting somebody out of a wheelchair.

  9. #29

    Success Rate of Fast Tracked trials

    Does anyone know how many of the Fast Tracked trials have proven effective vs not effective?

    -Steven

  10. #30
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    Another reason that Dr. Huang has my respect and admiration is that he keeps going with his procedures even though he is unable to fully explain the reason for such fast recovery of function. To me, this seems like a guy more concerned with helping people than wasting 5-7 years trying to figure out why it works. We need more of this. Schmecky, I would be willing to help with the Dr. Lima correspondence any way I can. I think we need to go through Will Ambler...

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