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Thread: Funding our own trials

  1. #1

    Question Funding our own trials

    I think I remember awhile back that Dr Young had suggested that there could be a way for us to fund our own individual trials. Obviously we have begun collectively with justadollarplease.org.

    Maybe concurrently, there is an opportunity to own stock in a trial of our choosing...chase perhaps. A year or so I compiled a large list of orgs all aimed at cure. There are dozens and dozens with no coordinated effort to channel the funds into reality.

    Is there any way to profit from our hard earned donations?

    Is there a way to start a fund like NTAF that would funnel funds into supporting a treatment for an individual patient? Are these thoughts possible? Delusional?

    Thoughts?

    I'm tired so tired of working, waiting and complaining.

  2. #2
    Quote Originally Posted by Chaz19 View Post
    I think I remember awhile back that Dr Young had suggested that there could be a way for us to fund our own individual trials. Obviously we have begun collectively with justadollarplease.org.

    Maybe concurrently, there is an opportunity to own stock in a trial of our choosing...chase perhaps. A year or so I compiled a large list of orgs all aimed at cure. There are dozens and dozens with no coordinated effort to channel the funds into reality.

    Is there any way to profit from our hard earned donations?

    Is there a way to start a fund like NTAF that would funnel funds into supporting a treatment for an individual patient? Are these thoughts possible? Delusional?

    Thoughts?

    I'm tired so tired of working, waiting and complaining.
    Chaz,

    The more and better designed the trials, the better for the spinal cord injury community. The trials should be aimed at answering important questions. For example, a trial to see if chondroitinase improves function is definitely worthwhile and I would strongly support such a trial. Likewise, I think that it is a good idea to put umbilical cord mononuclear cells and treat patients with lithium, to see if it improves function. If it does, that is great. If it does not, we move on.

    A lot of people think that I have some kind of commitment to umbilical cord blood and lithium. Well, after talking about it and raising money for the trials for the past four years, I suppose that it may seem like I am pushing for this therapy. I believe that it has a very good chance of yielding significant improvement of function and want to make sure that the trials are properly done so that we answer the question whether the treatment is safe and restores function.

    A lot of scientists push their own therapies and some may even badmouth other therapies. That latter is unfortunate but human. Some criticism of therapies is not bad. For example, it is important that the trials are testing the best way of delivering the therapy. I am quite critical, for example, of therapies that are just injecting cells (no matter what kind) intravenously and intrathecally. I don't think that cells will get into the spinal cord and this may explain why the treatment results have been mixed and modest.

    In my opinion, we need to support clinical trials that are done at the best centers and yield convincing evidence that show that a treatment is safe and effective or not. In either case, the community will benefit. We can focus our efforts on things that work and are safe. This is how therapies will progress and soon we will have the luxury of having multiple therapies that restore function in chronic spinal cord injury, rather than no therapy.

    Wise.

  3. #3
    Would an individual patient prove anything? The trial system seems to rely on comparison of a control group with a group who receive the therapy. Therefore by definition many participants must be involved.

    Also you want a great scientific team involved to get it done right and to analyze the results.

    I'm not rubbishing the suggestion but a private clinical trial (if that's what Chaz19 is suggesting) seems a big task logistically.

  4. #4
    Thank you for your thoughtful and comprehensive reply. I think I may have asked a confusing set of questions.

    As far fetched as it may be; is there any structural mechanisms in our clinical trial protocol/laws that would allow a patient to pay for part of a trial I.e rehab part of the ucmc/ lithium trial to reduce costs? Does this question make sense?

  5. #5
    .....
    Last edited by Christopher Paddon; 12-01-2011 at 08:57 PM.

  6. #6
    @Chaz19 I understand your question and reasoning but I don't think there is any such structural mechanism that exists like you propose. Basically, if any money comes out of your pocket, it's viewed as a purchase of a therapy. Whereas donating your body for the testing of a therapy in a clinical trial rather than donating your money is considered unbiased and should result in cleaner results and intentions.

  7. #7
    Quote Originally Posted by Chaz19 View Post
    I think I remember awhile back that Dr Young had suggested that there could be a way for us to fund our own individual trials. Obviously we have begun collectively with justadollarplease.org.

    Maybe concurrently, there is an opportunity to own stock in a trial of our choosing...chase perhaps. A year or so I compiled a large list of orgs all aimed at cure. There are dozens and dozens with no coordinated effort to channel the funds into reality.


    Hi Chaz,

    I think what you point out is one of the most frustrating things, that there are dozens and dozens organizations with no coordinated effort to channel the funds into reality.

    It would be great to have one sort of centralized organization that will raise and direct funds towards researchers that want to bring their therapies to humans with the goal of funding a cure (and not caring about publications, etc). I think we will need something like a large scale justadollarplease.org, that would centralize all this efforts and also act as a pressure group to raise other funds, whether public or private.

    Obviously, this is all easier said than done.

  8. #8
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    Regarding centralization of the cure effort.

    It may sound like a fine idea to centralize our cure effort at first. However, who would be in charge? How could they be held accountable? How do we guarantee they do not deviate from chronic cure into the vagaries and the Garden of intellectual delight (acute cure)?

    These questions and many others were answered long ago by Chuck Carson. Chuck knew human nature very well. Humans cannot be trusted. That is a general truism which I believe. We must have verification, synchronization and the rule of law. Of course, we must have enforceable contracts. We cannot leave research to the un-paralyzed and unmotivated. Therefore, we should never attempt to centralize cure.

    We can however, support those whose goals are in line with our own. We can be stewards of our own fate and monitor the financial markets to find those companies who do what we like. This chronic cure thing is a bear. A bear can be killed, however, we must be smarter and more diligent than the bear.

    I never met Chas19. From his writings I gather that he wants a chronic cure as fast as I do: read yesterday. I'm not prejudiced against able-bodied nor am I in favor of the disabled. I am simply warning all of us do not put your fate into the hands of an uncontrolled czar. That is one sure guaranteed way toward never finding a cure.

    Future Walker
    Futurewalker

  9. #9
    Quote Originally Posted by futurewalker View Post
    Regarding centralization of the cure effort.

    It may sound like a fine idea to centralize our cure effort at first. However, who would be in charge? How could they be held accountable? How do we guarantee they do not deviate from chronic cure into the vagaries and the Garden of intellectual delight (acute cure)?

    These questions and many others were answered long ago by Chuck Carson. Chuck knew human nature very well. Humans cannot be trusted. That is a general truism which I believe. We must have verification, synchronization and the rule of law. Of course, we must have enforceable contracts. We cannot leave research to the un-paralyzed and unmotivated. Therefore, we should never attempt to centralize cure.

    We can however, support those whose goals are in line with our own. We can be stewards of our own fate and monitor the financial markets to find those companies who do what we like. This chronic cure thing is a bear. A bear can be killed, however, we must be smarter and more diligent than the bear.

    I never met Chas19. From his writings I gather that he wants a chronic cure as fast as I do: read yesterday. I'm not prejudiced against able-bodied nor am I in favor of the disabled. I am simply warning all of us do not put your fate into the hands of an uncontrolled czar. That is one sure guaranteed way toward never finding a cure.

    Future Walker
    I was going to say the exact same thing. Monopolies are far less efficient than competitive markets.

  10. #10
    Quote Originally Posted by NowhereMan View Post
    I was going to say the exact same thing. Monopolies are far less efficient than competitive markets.
    That is true, but it does not really apply to our case here. We are dealing with a good the market is not as interested in producing (uncertain returns for a high investment in a long horizon) and we have an player to take into account (very important both because it directs funds and sets rules, approvals for clinical trials, etc..).

    I do believe a centralized effort would be very benefitial for a cronic cure for SCI. The main problems are the ones pointed out by Future Walker: who is in charged, how to supervise, how to clearly defined the actions that he (or they if we think on something like a board) can take...yes, human nature is too complicated.

    Still, the benefits would be substantial. It would not only be a form for chaneling existing funds into practical therapies and clinical trials for us, but for lobbying for public funds, getting the society involved, etc

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