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Thread: DR. WISE, QUESTION ABOUT SCI CLINICAL TRIALS

  1. #1
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    DR. WISE, QUESTION ABOUT SCI CLINICAL TRIALS

    Dr. Wise

    You always say: there's no money for SCI clinical trials.
    Q. is: So if it's about money, there are so many people from US going overseas spending between $20,000-$50,000 or more, for not very effective procedures vs the recent studies, so if gov. doesn't fund the SCI CL, why not have patients pay for their own procedure being done here instead overseas?

    I DON'T THINK ANYONE WOULD MIND SPENDING THAT MONEY HERE INSTEAD OVERSEAS.

    every time you fall,
    stand up tall....
    come back for more

    [This message was edited by luigi91377 on 09-12-04 at 01:16 AM.]

  2. #2
    Luigi,

    Clinical trials are indeed all about money. Both clinical trials and treatment costs are much higher in the United States than in places like China. For example, in the United States, having OEG transplants, all the tests, and private hospital room for 6 weeks is very likely to cost $100,000 or more. Also, in the United States, the general rule is that people do not and should not have to pay for clinical trials. They are being randomized to two treatment groups, one of which may be a placebo control.

    I don't understand why nobody is willing to tell our government to pay for spinal cord injury clinical trials. It is crazy. They are paying for cancer trials, AIDS trials, and trials for many other conditions. This is an election year. There are probably 300,000 or more families of SCI, adding up to over a million voters. If SCI were to join forces with MS, TM, spinal stroke, herniated discs, etc., we are probably a couple of million strong and would be a voice to reckon with. If we join with the disability community, we are talking about 54 million people. So, why not?

    Wise.

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    Dr. Wise,
    I agree...why wouldn't anyone want our fed gov to pay for clinical trials?
    And yes, we can and should join forces before this next election if we all don't want to go to china or portugal or whereever.
    s.

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    I don't understand why nobody is willing to tell our government to pay for spinal cord injury clinical trials. It is crazy. They are paying for cancer trials, AIDS trials, and trials for many other conditions. This is an election year. There are probably 300,000 or more families of SCI, adding up to over a million voters. If SCI were to join forces with MS, TM, spinal stroke, herniated discs, etc., we are probably a couple of million strong and would be a voice to reckon with. If we join with the disability community, we are talking about 54 million people. So, why not?
    how many years have we been saying this?
    in those years, how many letters we wrote with no success?
    even cr refuses to work with us but rather working alone.

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    Wise,

    There should at least be that option if people wanted to pay the 100,000 dollars or more for treatment here in the U.S. Just think if there where to be good outcome, public awarness would rise to staggering amounts! Don't you feel at that time the gov. would step in just as they have with asking me to testify on the US Senate for my procedure in Portugal, but on a *much* larger scale???
    Gods speed for a cure~

  6. #6
    Superstar,

    There is a different name for the kind of situation that you are referring to, called "compassionate use" of treatments. The FDA often gives permission for experimental therapies to be given to people when there are no other therapies that work. This was first inaugurated on a large scale with AIDS treatments. A doctor who is willing and able to apply a therapy can probably get permission from the FDA to apply a therapy to an individual patient if the safety of the treatment is reasonable and there is rationale for the use of such therapies. This was done for spinal cord injury in the past for GM1, for example.

    Please note that a clinical trial has the explicit and specific purpose of demonstrating safety and efficacy of experimental therapies, comparing the therapy against standard therapies. Each clinical trial may cost millions of dollars and the trials are designed to establish safety and efficacy. In general, people should not be paying to participate in clinical trials whereas they usually pay for "compassionate use" treatments.

    Wise.

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    Wise,

    I will pay for a "compassionate use treatment". What is the best thing you would offer to me? Lets keep moving for a cure, i will do this if you think you are close and i think you are!

    Gods speed for a cure~

  8. #8
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    dr. Wise

    Weather it's called 'compassionate use' or clinical trial, or john smith, that's irrelevant, the point is that we need something to start with, just to break the ice, just like susan, i'm sure there are a lot of ppl who have the money & are willing to pay and offer their bodies, just to get out of this miserable, worse then death situation. People who don't have the money will find a way to get it, again just to get out of this misery.

    Well, so far none of the exsisting therapies has worked for a SCI TO RECOVER 100%, so what would it take for a doctor to get a permission from FDA to apply the compassionate use treatment?

    Remember: 28000 times a day we are being reminded that we are paralysed, in every breath we take .

    WHAT ELSE COULD POSSIBLY BE NEEDED?

    every time you fall,
    stand up tall....
    come back for more

  9. #9
    Well, who told our government to pay for the other clinical trials, and how? Petition to get it on a ballot?

  10. #10
    cindyg,

    Almost all biomedical research and clinical trials in the United States is funded by the National Institutes of Health (NIH). Competition for the funds by NIH is fierce with less than 15% of grant applications being funded. So, investigators who want to study spinal cord injury have to compete with investigators who are trying to do Parkinson's disease, Alzheimers', etc. Congress can increase funding to NIH or specifically request certain programs get more funding. That is, for example, what the Christopher Reeve Paralysis Act was trying to do, requesting $300 million over three years to support the creation of "Paralysis Centers" to study therapies that would reverse paralysis, including rehabilitation. This bill has been stuck in Congress now for nearly 3 years. Wise.

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