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Thread: Da cure is coming

  1. #1

    Da cure is coming

    "Da cure is coming..." Sometimes, I feel like I am singing the refrain of a church hymn. I believe that the cure is coming but I don't know when. I don't know when because the obstacles to a cure are not scientific but sociological and economic.

    Many people have been posting their frustration with how long it is taking for treatments to get to clinical trial. Some people have called out for restricting certain avenues of research to pursue ones that are more likely to yield immediate results. Some people have opposed certain types of research (embryonic stem cells, for example) that many scientists consider to be promising not only for spinal cord injury but for other conditions. A few have blamed scientists for the slow progress.

    I would like to urge people to consider the following:

    First, spinal cord injury research is not and should not be a zero-sum game. A zero-sum game refers to a situation where all the resources are limited and if you shift resources to one area, it takes it from another. We must understand that spinal cord injury is a small part of a large research enterprise that is attempting the reverse the age-old dogma that the central nervous system cannot be repaired or regenerated, or recover from injuries. The CNS restoration field is in turn part of a much larger neuroscience effort. The neuroscience effort is part of a huge biomedical science effort. Stopping research in one arena (such as embryonic stem cell work) does not mean that the saved funds will be diverted into spinal cord injury research. Nor does it mean that having such research will steal money from spinal cord injury research.

    Second, think not of just yourself but also future generations. To say that we should eschew research that does not benefit the current generation but that is likely to benefit future generations is an unacceptable position to take. We must not allow society to force us into that choice. We must demand that research funding be adequate for both the current and future generations. Incidentally, the spinal cord injury community is divided regarding the possibility of a cure that will come in time to benefit the current generation. Almost everybody, however, agrees that the research will benefit future generations. To oppose research that will benefit future generations because it will not benefit yourself is ultimately selfish.

    Third, we must understand the obstacles to progress of therapies to clinical trial. The obstacles are not scientists or their attitudes, as suggested by some in these forums. The scientists are doing what they should be doing... delivering data from animal studies, trying to convince the world that these are promising treatments that should be taken to clinical trial, and working very hard to ensure that the data is as reliable and predictive as possible. The obstacles are:

    • Lack of funding for clinical trials. The government and companies are not investing. Charitable foundations do not have enough funds. This is a serious problem and this is problem that the spinal cord injury community can and should solve.

    • Slow clinical education. Many of the doctors in the field are not up on the latest in spinal cord injury research. They do not come to the meetings or read the journals. Even worse, they may not understand or believe what is happening when they do come into contact with the information.

    • Fractured spinal cord injury community. While many members of our community belies and supports a cure, this is not the case for most people with spinal cord injury. It is frightening to me how many people and families with spinal cord injury are totally silent when it comes to research. Some even openly oppose research funding. If you don't believe this, just look at how much the National Institutes of Health is spending on spinal cord injury research... less that $100 million per year.

    As I have said time again, we are behaving like a wagon train that has circled but all the guns are pointing inward. Until we start addressing the real reasons why therapies are taking a lot time to develop, it will take a long time.

    Wise.

  2. #2
    Senior Member Schmeky's Avatar
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    Dr. Young

    God bless you for this post. However, here we go again with the big question; If clinical trial funding were available, and Doctors were up to speed, etc., etc., as you have so eloquently pointed out, how long do you estimate in months, years, (God forbid - decades) it would be before the SCI community could be cured?

    With some guidance, I would be more than willing to direct my energies to have the areas you have indicated as deficient, improved and expedited.

    Lastly, I am scheduled to attend Project Walk in November, 02. Would I be better to wait for treatment, then attend? I sometimes feel that I may be putting "B" in front of "A".

  3. #3
    Senior Member Schmeky's Avatar
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    Forgot This:

    Qoute:

    "obstacles to a cure are not scientific but sociological and economic".

    So the actual physical cure is currently a reality?

  4. #4
    Wise,

    Perhaps the ICCP ( http://www.campaignforcure.org/ )has not been as effective as they have hoped. The idea behind the ICCP is a good one, but it would seem that this effort isn´t pulling the rank and file SCI community members, as well as the smaller non-profit SCI organisations together.

    Perhaps the concept of pulling resources together toward finding a cure has not been broadcasted enough, has not been successful enough, or has been neglected. This link for an example: http://carecure.rutgers.edu/Quest/QuestHome.html has great information regarding the pro-cure SCI lobbying effort undergoing in the US, but all updates stopped in December of 2000. This link is displayed on the ICCP website, so this is an eyesore that should be fixed, in my opinion. Perhaps if CareCure members could send Jeff some links showing some more timely
    efforts which have happened within the last year or so, this page could be updated.

    The ICCP has had some influence however. This link from the Council of Europe, which I would bet has already been posted on this site: http://assembly.coe.int/Documents/Wo...2/EDOC9401.htm shows evidence off this. Too bad I couldn´t find anything on the WHO website regarding new efforts into promoting spinal cord research. I guess this ball isn´t rolling that quickly, but it does show that lobbying can have true effect.

    I think an active email promotion effort should be undertaken to motivate the smaller SCI organisations and groups to join the ICCP. I´d like to see some Japanese, Indian and African SCI groups join up on the bandwagon.

    I do hope for the sake of the SCI community that the ICCP is not some kind of exclusive group mearly of the "affluent" SCI funding and research organisations. Since the spalt in the community seems so glaring, some rethinking might produce some beneficial effect. With additional membership, the ICCP could gain more influence and lobbying power, and thus directly help the SCI community´s rank and file as a whole.

  5. #5
    Senior Member DA's Avatar
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    their is so much i have to say about this thread. let me do a little at one time not to confuse ideas.


    " Slow clinical education. Many of the doctors in the field are not up on the latest in spinal cord injury research. They do not come to the meetings or read the journals. Even worse, they may not understand or believe what is happening when they do come into contact with the information. "


    military keeps up with research and technology to stay a step ahead.
    game makers keep up with chip makers. everyone keeps up to have the latest version. why is it those resposible for our health choices the oldest most outdated methods? why can't they keep up? is "put patience health last" their motto?

  6. #6
    Senior Member Jeff's Avatar
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    Mike C

    You're correct that the Quest web site hasn't been updated in a long time. The work has continued, however. Legislative efforts are ongoing.

    Also, I've already developed a new Quest site. This new site is database driven and has simple to use tools for adding information. This means the Quest administrators can keep the information current without needing to learn web site development. I expect they'll be ready to implement the new site in the near future.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  7. #7
    Regarding slow clinical education....

    I concur with this statement. Especially here in Germany, doctors do not have to participate in any type of refresher or advanced courses. There is no mandate or law requiering them to do so. Result: Many medical doctors become lazy and handle their patients based on old and outdated information they learned in medical school, even though a wealth of new information is available on the web.

    Wise, I believe this web site has got to be a part of the answer, at least for those medical professionals who can read and understand english. The opening home page of Carecure automatically shows the article section. The information listed in those articles alone could open the eyes to many on to just what is really going on in the SCI world. And, because they are written is such layman language, anybody, especially doctors, should be able to understand the information with little trouble.

    What´s it going to take to get the word out? Maybe we could write a few classified ads in a few medical journals and see if we can get some medical professionals as new members. As for those MD´s who are too lazy to come to the meetings or read the journals, that´s a tough problem.

  8. #8
    MikeC, since you're so good at finding fault with everything let me ask you exactly what it is you're doing to help cure sci, aside from telling everyone what they're doing wrong?

    Schmeky: Good point catching the sentence bout "sociological, economic". The answer, which I've been screaming, is simple; MORE MONEY

    DA, guns pointing inward sound familiar?

    Everyone go and raise $5,000 this year. The more money, the more trials, the faster we're cured. Every dollar counts.

    Onward and Upward!

  9. #9
    Lack of funding for clinical trials.....

    I pasted this comment from the Council of Europe´s report "Towards concerted efforts for treating and curing spinal cord injury".


    "Thus the significant economic cost of spinal cord injuries should encourage Council of Europe member states to increase their concerted efforts towards supporting and financing research aimed at finding a cure for paralysis. In this way there could be significant cost savings ."

    It´s so insane not to invest in research. The costs of Spinal injuries to first world nations economies alone on a yearly basis is so astronomical, yet combined concrete action is nearly non-existant. Based on data from the ICCP website, the above stated report, and checking up on the Austrailian SCI site srfa.com.au, the total yearly costs of the US, Europe, Canada and Australia, alone are running at about 22 BILLION dollars a year!

    The COE´s recomendation to: "join together in promoting the establishment of a World Health Organisation (WHO) collaborating centre for the co-ordination of research and development concerning spinal cord injuries, financed with all available resources, both public and private, with a view to making cost savings through joint efforts;" makes sense.

    This is why I believe a stronger ICCP may help get such a program started...but it needs more international flavor for WHO to give it a second look.

  10. #10
    Senior Member DA's Avatar
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    sorry chris im not a good little quad naively believing all the BS thrown at the sci community. all i ask of US researchers is to do their jobs well, if the job is too much work then leave the sci field and go slow down someone elses quest for a cure.

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