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Thread: "CURE" Protocol

  1. #1
    Senior Member
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    "CURE" Protocol

    Does anyone here know what the plan is when a viable treatment for spinal cord injury is approved of in the U.S. ? Has anything been planned for what seems will be a very large number of people who will need and want the new therapies? Will it be one doctor at one hospital who will be specializing in the surgery or treatment? Is there any organization working on a plan of action? If there will be a curative treatment in the next five years, shouldn't plans be in the works now, as to addressing on the best way to treat the patients and follow up recovery or physical therapy? Will there need to be alot of educating of medical practioners ? Yes, there are alot of unanswered questions, just as there are alot of unanswered questions as to the validity of what is really happening here in the U.S. with current research. Everyone is playing there own game, so it seems, and I don't see how anyone is going to end up on the same page. It seems the best hope for a cure treatment is to wait and see what happens in other countries, and then maybe we can try it here, in a clinical trial of course. As I see it, there is only a very small amount of people active in finding a cure, that are sincerely concerned about the real plight of the spinal cord injured and the quest for a real solution towards cure. I hope it don't end up in a situation where only money can get you the cure. What are the odds of having a cure therapy available that will be medicare approved within the next 5 years ? I'll take my odds of being struck by lightning first. Medicare won't even approve a standing wheelchair, and we all know how therapeutic a standing chair would be, if you could afford one. What I'm getting at is there will be alot of people awaiting a new therapy that has good odds of improving their currernt life and I just pray to God that it will be available for all sci, andf I do hope a plan of action is in the works

  2. #2
    Senior Member giambjj's Avatar
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    cure

    When the cure comes it will already have been available outside the US for a least 3-5 years prior. Therefore 3/4 of the SCI patients in the US will have loss patience here and will have recevied treatment outside the US. Look at the increased numbers of patients that are now leaving the US for treatment in Europe, Asia, and South America. Traveling and money will not be a problem, when treatments start showing real progress.

  3. #3
    Senior Member vgrafen's Avatar
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    Alas, my Jack...

    Your plaintive, rhetorical cry to the wilderness, dear Jack, I hear its echo come round, so reasonable, sensible, your passion for order, preparation, sanity...

    Jack, Jack, you don't get it, Jack, we're the diaspora, Jack, we'll have to come crawling back into the land of the living, our home, one by one, on our own we'll be dribbling in, each somehow having found his or her trail...

    Jack, Jack, how can I tell you this, Jack? BY the time They have it organized for us, Jack, it won't matter...

    vgrafen

  4. #4
    It is so frustrating... I just typed a long message and the internet connection failed (I am in Bali, Indonesia)... Let me try to reconstruct my reply.

    I agree with vgrafen and dr.jj. There needs to be a concerted push by the community to ensure that doctors know about the therapies, that the treatments become available in the United States, and that the treatments are covered by insurance. Let me just comment briefly from my experience with methylprednisolone concerning how difficult it can be and what the solution should be.

    When we published the methylprednisolone results in 1990, in the New England Journal of Medicine, I thought that doctors would embrace the treatment. But in the following two years, less than 50% of Americans with spinal cord injury got the drug for a variety of reasons. It took several years of concerted lectures and talking face-to-face with doctors to get the United States to the point where 90% of the people are now getting the drug. I must have given over 500 lectures to doctors on the subject over the past decade.

    The solution really is to get as many doctors as possible involved in multicenter clinical trials. That is one of the reasons why I am so pleased by the 4-AP trial that has started in over 75 center around the U.S. and Canada. It is by the far the largest spinal cord injury trial ever conducted. By the end of the trial in early 2003, a majority of doctors who take care of chronic spinal cord injury will be familiar with the drug and its use. Clinical trials is a way of educating doctors.

    After the FDA approves of a treatment, the more difficult step is to get the federal government to approve the therapy for coverage by Medicaid and Medicare. That has to be negotiated with HCFA (or whatever its new name is). But, once the government includes it in the coverage, all other insurance companies will follow suit. Getting FDA approval is easy by comparison. All you have to do is to show the FDA that the treatment is safe and efficacious. To get insurance coverage, you have to show that the treatment is cost-effective. Finally, even after you get insurance coverage, you have to convince the doctors to use the therapy. The latter can only come from consumer demand for the therapy.

    Wise.

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