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Ten frequently asked questions concerning cure of spinal cord injury

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  • Originally posted by paolocipolla View Post
    Thank you Wise for the clarification, I remember about Ira Black, I was very sad when he passed away.

    Paolo
    In 1999, when Ira Black first reported that his laboratory found neurons in cultures of bone marrow stromal cells, I remember the great skepticism and even outright claims of fraud. There were people who claimed that Ira was looking at dead cells or cells that look like neurons but were really not neurons. His discovery broke the dogma that cells do not transdifferentiate.

    Wise.

    Comment


    • Hi!

      I think chiropractors can help regarding spinal injuries.

      Comment


      • Originally posted by Msore58 View Post
        Hi!

        I think chiropractors can help regarding spinal injuries.
        Msore, I am sorry but I disagree with you. Chiropractors do not have the training or the therapeutic tools to help people with spinal cord injury. Wise.

        Comment


        • New to CareCure

          Hello Dr. Wise,

          My 28 year old brother had a car accident last June. He's got a C5-C6 level injury. He's had lots of problems with a pressure ulcer he developed during the first days while he was in intensive care and now has some issues with his urinary system so, eventhough he's spent six months in a rehab center hasn't been able to do much rehabilitation so far.

          I have read lots of stuff during these months and if you don't mind I'd like to ask you a couple of questions:

          1.- Looking at internet you can see there are lots of approaches to try to solve SCI with stem cells: umbilical cord cells, embryo cells, bone marro cells, olfactory cells,... Is there any consensus regarding what techniques have better chances to succeed?

          2.- In the initial post of this thread you mentioned it sounded reasonable to expect 3rd generation techniques that would deliver big gains to patients in 8 years. Given the post is from 2004, the question is: are you still so optimistic? should we expect something big for the next couple of years or things haven't moved as fast as you expected?

          I would also like to thank you for all the efforts. We might be close to a cure or not but what is for sure is that if nobody tries we'll never get it. Sometimes I have the feeling when talking with some of my brother's doctors that they've given up (if they ever believed in a cure).

          Lots of efforts and resources are put in SCI "care", and that's ok and necessary but maybe some of these efforts and resources should be gradually moved to SCI "cure".

          Again, thanks for your efforts

          Comment


          • Brother; good post; we have to push for "cure"

            T.J.

            Comment


            • Originally posted by brother View Post
              Hello Dr. Wise,

              My 28 year old brother had a car accident last June. He's got a C5-C6 level injury. He's had lots of problems with a pressure ulcer he developed during the first days while he was in intensive care and now has some issues with his urinary system so, eventhough he's spent six months in a rehab center hasn't been able to do much rehabilitation so far.

              I have read lots of stuff during these months and if you don't mind I'd like to ask you a couple of questions:

              1.- Looking at internet you can see there are lots of approaches to try to solve SCI with stem cells: umbilical cord cells, embryo cells, bone marro cells, olfactory cells,... Is there any consensus regarding what techniques have better chances to succeed?

              2.- In the initial post of this thread you mentioned it sounded reasonable to expect 3rd generation techniques that would deliver big gains to patients in 8 years. Given the post is from 2004, the question is: are you still so optimistic? should we expect something big for the next couple of years or things haven't moved as fast as you expected?

              I would also like to thank you for all the efforts. We might be close to a cure or not but what is for sure is that if nobody tries we'll never get it. Sometimes I have the feeling when talking with some of my brother's doctors that they've given up (if they ever believed in a cure).

              Lots of efforts and resources are put in SCI "care", and that's ok and necessary but maybe some of these efforts and resources should be gradually moved to SCI "cure".

              Again, thanks for your efforts
              Brother,

              Thank you for your message. Let me try to answer your question as best as i can. There are no clear answers and in some cases no answer to your questions.

              First, let me state the obvious at the outset. The cure is not yet here. That is the answer to your first question. There cannot be a consensus regarding a cure when none of the therapies are curative or even acknowledged by a majority of clinicians to be so. While several of the therapies have been claimed by individual clinics to be beneficial for spinal cord injury and even been reported in publications to be beneficial for animals, there is no credible evidence that any of them restore significant motor function.

              Second, when I outlined the steps towards developing effective therapies for spinal cord injury, I was addressing obstacles to axonal regeneration and neuronal replacement and not sociological and economic obstacles. In the 1990's, I could not possibly have imagined that the United States would suffer the worst terrorist attack in its history and that this would divert the attention of the nation for 8 years. When I wrote about the roadmap for the cure in 2004, I had not anticipated that we would be plunged into the worst economic recession since the Great Depression. In 1995, when Christopher Reeve asked me whether a cure is possible and when it might occur, I told him 7 years was the shortest possible time and that was only if we had sufficient resources, were lucky, and worked very hard. We did not have sufficient resources and were very unlucky.

              I agree with you that if we don't try, we won't get it. Nobody will hand the cure to us. Last year, I realized that we should also not be expecting somebody else to pay for the cure. After all, if the spinal cord injury community will not pay what it takes to get a cure going, who will? If we don't take the time to understand the problems of the field and solve them, who will do it for us? They say that there are over a million families with spinal cord injury in the United States. How many of these families are doing anything for the cure of spinal cord injury?

              Let me talk a little about resources. At the present, the major source of funding for spinal cord injury research is the NIH. Their budget is probably on the order of $60 million and contains little or no money for clinical trials. Many states have some kind of spinal cord injury research funding program and these have helped keep the field alive after 9/11 and federal funds for research did not increase over the last 7 years. Private funding of spinal cord injury research probably never exceeded $30 million per year and very likely declined significantly last year during the recession. A few companies are spending several million on spinal cord injury clinical trials. So, added together, this country is spending less than $100 million per year on spinal cord injury research.

              In my opinion, $100 million per year is not enough to produce restorative therapies in ten years or less. We will have to work a lot harder and be a lot luckier, if we are to achieve such therapies in less than ten years. On the other hand, we have come a long ways on the small amount of funding over the past 8 years. I think that we now know what combination treatments are necessary to regenerate axons in the spinal cord and need to test these therapies systematically in clinical trial. We also know from animal studies that neuronal replacement is possible to repair damage to gray matter in the cervical and lumbosacral spinal cord.

              While there is not much that we can do about bad luck (other than to keep on trying), there is a lot that we can do about insufficient resources. We need to hold our government's feet to the fire and get them to fund more spinal cord injury research. In fact, Congress has passed the Christopher & Dana Reeve Paralysis Act and we need to push them to appropriate sufficient funds and to implement the legislation. There are a million families with spinal cord injury in the United States. If every family were to contribute $1 a day, that would add up to over $365 million per year.

              Our greatest need right now is funding for clinical trials. All the animal experiments in the world will not get therapies to people if we don't do clinical trials. This is so obvious and yet we have a large number of people in the community, even on CareCure, who don't understand the need for and may even oppose clinical trials. Many people have gone overseas and paid exorbitant amounts for unproven and ineffective therapies. I can work my heart out in the laboratory and organizing clinical trials but without clinical trial funding, we can't get therapies to people.

              The fact that the above points are not apparent to everybody in the community also tells me that we are not educating our own community about what is needed. We are not working together to make things happen. Most of our time is spent fighting each other over inconsequential issues. People appear to be happier taking potshots at each other over their political views than doing something for the field and for themselves. I have often felt that the spinal cord injury community is like a wagon train that has circled and all the guns are pointing inward at each other rather than outward.

              Despite all of these obstacles, we continue to make some progress. For example, we are starting clinical trials in China, testing umbilical cord blood mononuclear cells and lithium. Hopefully, in the next 6 months, we will have determined that the treatment is safe and feasible so that we can take it to a large pivotal trial to assess efficacy of the combination treatment. Doctors are becoming enthusiastic about the trial in the United States, India, and Europe. Trials should start soon in these places as well. The few funded U.S. spinal cord injury laboratories are continuing their work and some of the slack has been taken up by laboratories in China. New therapies continuing to come out of the pipeline. So, we are moving but we can move a lot faster. I can tell you that I am not satisfied with getting a therapy in ten years or even five years.

              Wise.
              Last edited by Wise Young; 01-19-2010, 06:20 PM.

              Comment


              • Huge Problem

                Dr. Young,

                I respect and trust you unconditionally and your post above scares me and makes me sad. Just reading your statement that, "In my opinion, $100 million per year is not enough to produce restorative therapies in ten years or less." is so disheartening because I'm sure that you are right. The thought of another 10+ years in a wheelchair is unbearable so I don't let myself think about it. The saddest part of the whole thing is that we spend so much energy fighting amongst ourselves that it distracts us and the rest of the world from our goal... CURE. I'm glad that you are not satisfied with getting a therapy in ten years or even five years because your commitment and motivation helps me keep going. Thank you!

                PJ

                Comment


                • Wise, know that there is no fighting among us that want to see your efforts and others go forward. I believe that we are getting closer and that if we speak as one voice, we can continue to bring this to proper attention.
                  Again, if there is anything we can do or if there is anything you want us to do, please say. We can continue to contribute to the effort on our own which some of us are doing.

                  Comment


                  • Keeping on, I respect your posts but disagree with you on this one. To the uneducated observer (me, although I have read thousands of posts in the past two months), Dr. Young is on the money with his post (above), including especially about all of the fighting and potshots. For the members of this forum, I am so glad that he has said these things. His post should be a wake up call and is a challenge to all of the members of CC who are tired of playing around and actually want to accomplish something. It shocks me that he has said these things and only a few members have even posted a comment.
                    2012 SCINetUSA Clinical Trial Support Squad Member
                    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                    Comment


                    • Originally posted by P. J. View Post
                      Dr. Young,

                      I respect and trust you unconditionally and your post above scares me and makes me sad. Just reading your statement that, "In my opinion, $100 million per year is not enough to produce restorative therapies in ten years or less." is so disheartening because I'm sure that you are right. The thought of another 10+ years in a wheelchair is unbearable so I don't let myself think about it. The saddest part of the whole thing is that we spend so much energy fighting amongst ourselves that it distracts us and the rest of the world from our goal... CURE. I'm glad that you are not satisfied with getting a therapy in ten years or even five years because your commitment and motivation helps me keep going. Thank you!

                      PJ
                      PJ, I have been working for over 30 years on spinal cord injury research and I can't bear the thought of spending another ten years doing this. We will do it together but I also want people to know that it will not be easy and we will need lots of help and support.

                      The average time that it takes for a company to take a single new product from laboratory to market is currently 12 years and over a billion dollars. Our goal in ChinaSCINet is to get umbilical cord blood and lithium through phase 3 clinical trials in half the time and with less than 6 million dollars. We started in 2005.

                      Wise.

                      Comment


                      • swh2007, I appreciate your post; I'm commited to move forward with those that want to move forward. I think if we can unite our voices to the right parties, we can become a focus for discussion by those that could and should help.

                        I want to make sure that Dr. Young agrees with the path forward. He has dealt with everything and anything on this matter. Let's all hope that the trials that he is conducting yield positive results; a ralling cry for all of us.

                        We must stand together and look past those who want to postpone advancement; but include those same people for a race for improvement. I want all to benefit in someway. Include all, but focus on moving forward.

                        Comment


                        • Thanks. What can we all do to unite to achieve common goals, do our best to take care of our own, build our active membership and grow our voice, and be an effective voice to raise awareness, raise money, and influence research and other matters that affect us in a positive way? To me, these are the important questions for the CC Community to answer and act upon.
                          2012 SCINetUSA Clinical Trial Support Squad Member
                          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                          Comment


                          • swh2007; can't be any clearer than that. I've asked Wise for his take on whether we sould contact Tom Harkin as a group or individually for input on what the Senator is doing or what he knows. Do we unify as one voice making ourselves known; not that we're not known,or do we run the risk of starting something we don't want at this time. We have Wise's human trials and other possible advancements goin on though out the world. We may have some concrete evidence of a possible cure this year. Again, I'm only saying maybe the possibilty of a cure; don't want to get ahead of myself. But Tom Harkin has a website on his profile. I've e-mailed him but got no response thus far. He is known as a champion of our endeavors and we can support him as he supports us. Let's keep talking and take appropriate action.

                            Thanks'
                            T.J.

                            Comment


                            • Tom Harkin has a nephew with spinal cord injury. He is very aware of what it is like to have spinal cord injury and understands the need for research to achieve a cure. The important thing when talking to politicians is to know what you are asking for and not just ask the politician for general support.

                              Tom Harkin has the power and will to put more appropriations into the Christopher and Dana Reeve Paralysis Act (he knew both of them personally). It has been passed by both houses of Congress but the appropriations for NIH for this particular act has not been made. The level of appropriations comes from the Health and Human Services Committee that Tom Harkin chairs.

                              I urge people who want to be involved to read about the history of the bill from our Legislation and Advocacy Forum and to find out the latest status of the law and how much funding has been appropriated and whether any part of it has been implemented. Armed with that information, then find constituents in Iowa (there are many families with spinal cord injury who are on this site) and put together a visit to his office there. In addition, a team can visit his office in Washington. Off your help, listen to his staff concerning what he would like to do, and what you can do to help.

                              This process is called finding a champion for your cause and supporting that champion to achieve what legislation and appropriation you would like to see.

                              Wise.

                              Comment


                              • Wise; my understanding from you is that funding is defective and not what we would like it to be; rather than looking for clues; I'm wondering if Sen Harkin is on a plan for funding and for a path for a cure; ie. your trials or any other investigation he has investigated and deemd worthy. I'm well aware of the path that these take and also the fact that stem cell therapy is controversial. That's why I asked if the latest finding on using unbilical cord blood cells without the probl;em of rejection would eliminat the problem of insufficent amounts. You have sited numerous times that this was a formidible problem in terms of cost. You also have indicated that this finding announced last week was a significant breakthrough. So my point is does Sen Harkin nees our help or does he have a plan going forward? If so what is his plan and what can we do to help.

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