Announcement

Collapse
No announcement yet.

Da cure is coming

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    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
    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".

    Comment


      #3
      Forgot This:

      Qoute:

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

      So the actual physical cure is currently a reality?

      Comment


        #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.
        "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

        Comment


          #5
          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?

          Comment


            #6
            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 ~
            ~See you at the CareCure-used-to-be-paralyzed Reunion ~

            Comment


              #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.
              "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

              Comment


                #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!

                Comment


                  #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.
                  "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

                  Comment


                    #10
                    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.

                    Comment


                      #11
                      Well Chris, since your all mad at me, I´ll tell you.

                      Right now the main goal my wife and I have is to open a local PT praxis for people with neurological conditions...be it stroke, SCI, MS or what not. Where I live, after a person goes through an initial rehabilitation for a neurological condition, they are sent home. More often than not, the local PT practices are woefully inadequate to handle such patients. There are no Vojta or Bobath benches, no Uppertones, no FES bikes, standing frames, gait trainers, so on and so on.

                      Because of social medicine, insurance is not a problem. Doctors prescribe physical therapy for such patients on a permanent basis..usually a prescription runs from 6 to 10 session intervals upon which the patient returns to his or her doctor for a new one when the old one runs out. When such a PT praxis would operate under a non-profit organisation umbrella, the profits can be re-invested tax free into either new equipment, or for seed money to open a new non-profit praxis up in another town. It would be like franchising.

                      The need is most certainly there. Currently I have acquired an Uppertone, standing frame, passive leg trainer, various PT equipment such as a TENS stimulator, a Bobath bench and an upper body cardiovascular wheel with optional Tetra grips.

                      As of now, we have to get qualified. If you don´t have the qualifications, you cannot be accepted for insurance compensation which is a critical element since most patients are not rich enough that they could pay for such therapy out of pocket. In Germany their is a non-profit organisation called Aktion Mensch which is lottery financed. This organisation provides grants to other non-profits who wish to establish new concepts with the sole purpose of aiding the disabled. We hope to qualify for such a grant so that we could acquire a Lokomat or other automatic gait training device.

                      It all takes time however.
                      "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

                      Comment


                        #12
                        DA, you missed my point. Nobody's asking you or me or any of us to be "good little quads". However, continuously slinging unwarranted arrows in the wrong direction just keeps slowing the progress not speeding it up. Because we as an sci community can't get our act together. We're really good at stomping our feet but really bad at the basics - organization, focus, funding, application.

                        Our sci injured community is at least half the problem if not more.

                        Onward and Upward!

                        Comment


                          #13
                          This is exactly what Wise is saying.

                          We are fighting with the wrong people. Stop all the bickering and all the bullshit among the SCI family (in which we all belong or you wouldnt be reading this). We must all focus on our main priority. A CURE. We will only reach this by working together.

                          First: How dare anyone blame the researchers who are working day and night to get us out of these wheelchairs? We must only encourage and let these people know we are behind them 100% Anything less is unacceptable.

                          Second: All of us must unite and do whatever we can to support research. We can all do something; and right now its raise money. I dont care if you have been injured for 20 years or 2 months, the time for a cure is now and i for one cannot sit in this chair any longer knowing we are so close to a cure. If anyone wants to join my familly and i continue to raise money for SCI research please email me at xturnnal@aol.com


                          Third: The reason we have been hearing 5 years for so long was to raise awareness and to let people know that a cure is possible. Now that we finally are at the point of cutting edge research many are shying away from what is real. If you have something negative so say keep it to yourself becuase it is not helping any of us.

                          The main point here is that we will be more effective if we are working together. We are all on the team but not playing together. We must change that now. If we need a voive to step foward iam willing to the one however no one will listen if we do not unite. For the govt. and investors to take us seriously they must see us all working together. If we believe they will believe too.

                          Comment


                            #14
                            no chris i didnt miss the point. once again everyone trying to put researchers above critcism. a free ride. opens the door to exploitation. we have been doing things "your type" of way for years and where has it got us? NO WHERE.
                            I cant go to the doctors and get a few levels recover after DECADES of research. only the sci community find that acceptable. the world's most bone ignorant community. imagine cancer accepting low funding and zero progress...IT WOULDN'T HAPPEN. they dont go around telling each other to accept cancer and get on with your life. in the mid 90's on the cpn forum all we talked about was how researchers was getting rats to walk. that was damn near 10 years ago. I KNOW, DA be a good little quad for another 10 years right?


                            X your words are music to the ears of bad researchers. Whaaaaaaaaat? you didn't know they exist. yessssss, they use the word cure to get money and this money goes toward non-cure programs. Tirr and Shepard comes to mind. maybe the good researchers may not deserve my criticism but they refuse to speak out against the bad ones so they are just as guilty especially when they point the finger at the community. stop the bad researchers from stealing the money and maybe the good ones will have some money.

                            Comment


                              #15
                              Good post, Wise. I also appreciated your post, xturnnal.

                              Schmeky and others, it does no good to continually ask Wise when a cure will be here. He has said many times he has no crystal ball. Any guess on his part is speculation. When Wise says there are sociological and economic hurdles, my guess he is saying the scientific proof that nerves can regenerate exists and the damaged spinal cord can be fixed. It is now a matter of money (economics) and the will of society. It does NOT mean that every scientific hurdle has been crossed, only evidence that they can be crossed with enough funding and effort. It has taken centuries to reach this point.

                              DA, I grow weary of reading your attacks on what you believe to be lazy scientists. Lazy why? Because they have not produced no cure for you? Some scientists working on sci research have loved ones with sci or are sci themselves. Some have good friends who are sci. When you make comments like you do, it lumps all scientists and researchers together and paints them with the same brush. Do you really believe all these sci researchers are lazy and worthless bums just out to collect a paycheck? In truth, you have no idea of which scientists are lazy and which are not unless you know them personally and work with them daily. It would be nice if you could start making more mature contributions to the discussions other than just glib comments that one could hear by a drunk in a bar. Maybe you could start by naming the scientists by name that you believe are lazy and then telling us why.

                              I am always astounded at the selfishness and immaturity displayed on these forums by a vocal few. For example, I believe there are just a few (or maybe just one) that don't want research into ESC because they are convinced that avenue will draw research dollars away from sci. On another thread a scientist said that he believed it would be ten years before ESC research would bear fruit, and Jim Kelly grabbed that piece of "news" and shoved it down our throats in a "I told you so manner" -- as if none of use knew it would take that long. In fact, I believe the vast majority of forum members believe any ESC therapies are likely to be 10 years or more in the future. It has certainly been discussed enough on the forums, yet Kelly seems to like to tell us all how we all think, and most of the time he tells us we think the way we do in order to justify his own positions. Sometimes, a few discuss ESC therapy as if we (the sci people) are the only people on earth with an affliction, so if ESC therapy is 10 years off for sci, the hell with it, we should not support it, they say. And with that attitude they are saying to hell with anyone else with any disease or affliction that might someday be cured by ESC. Ten years is really a short period of time in scientific research. Read your history books. Sometimes sought after cures and discoveries take centuries, not decades.

                              I believe Wise might be using these forums to conduct an experiment. The experiment is whether or not a group like sci people can get together on a massive worldwide basis to learn about research, support research and raise money to promote research, and thus bring a cure faster. It started off pretty well five years ago when the Internet and email was used massively to support the Paul Richter bill in New York. These forums have also been useful getting state funding passed for research to the total tune of 30 million dollars or so. And I know these forums have spurred others on to their own fund raising projects. Perhaps this great experiment will fail, I don't know, and forums like this will end up as being worthless. But so far a lot of good has come from Wise and his efforts to get sci people together on this forum from around the world. A lot of money has been raised and I know of no other forum where people can get such detailed information about sci in countless articles by Wise and posts answering personal question. Through Wise and his efforts on this forum, the sci community is probably the most knowledgeable about their conditions of any group with any affliction. We are also the most knowledgeable about current research breakthroughs.

                              I wish everyone that posts here would do so with maturity, thoughtfulness, and respect for others and respect for what Wise is trying to do for the sci community.

                              [This message was edited by Bill J. on Nov 04, 2002 at 08:56 AM.]

                              Comment

                              Working...
                              X