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    #16
    Dr Young,
    Thank you for your thoughtful and delicate response. Let me start by apologizing for any suggestion that your credibility is in question, this was not my intention. The forum alone has given me a high regard for your character, and hence the willingness to seek your counsel as well as question some of your specific comments. I commend you for your careful designs on the research with its potential encumbrances. Though it was not necessary to explain the nuances of your vital work, I am thankful for your articulation and the explanations were helpful. I now recognize that one fault of my original post was to compare Shroff’s work with any other researcher’s. I know that she is not conducting a trial but rather providing treatment. Its then the consideration of a premature treatment, that is in question. While I recognize that anyone in search of treatment weighs benefits and risks, from a root canal to a triple bypass, we do have some comfort in the systems, which regulate safety. Having said that, I believe there to be an inherent conflict of interest in the practice of medicine, specifically as it pertains to procedures and pharmaceuticals. Physicians must maintain a high degree of integrity based upon their fee structures and compensatory relationships with health care systems, providers and pharmaceuticals. My confidence in our healthcare system was as much shaken as it was strengthened this past 15 months. Were it not for my years of work within that system there may have been more shaken than confirmed. Suffice to say it is that, in part, which is a derivative of why we are here. At a certain point one must hand their trust to a practitioner in the hopes that their acumen, and claims are valid. For us, this willingness came after repeated correspondence with Shroff via email and phone, and as mentioned earlier in the face to face conversations with previous patients…not at all unlike the word of mouth endorsements of physicians at home.
    Let me clarify a couple of things:
    • I recognize that Shroff is not performing clinical trials. She is offering treatment, which should in my opinion be available in the US.
    • While I understand her reticence to publish, I also understand that it is her intention to do so. I would certainly feel more confident if there was reviewed data and an external body confirming the treatment offered. She does have a governing board, but I know from personal experience that does not ensure impartiality. I do believe that if she has found a technology that works, at some point she is duty bound to open the doors for review and export. The few physicians who have visited this clinic from the west, who had positive findings, encouraged me. It has been a while since I read their reviews or I would give their names to you now. I recall one who was sent here by the ministry of Health from Iceland. It was a cursory report, but it was nonetheless encouraging.
    • I do not know who the person you interviewed was, but find it difficult to believe that the cost of treatment was $82K. The cost of treatment is approximately $16K per month to include; room, food, twice a day PT (5 days/wk, and one session on Saturdays), 24/7 nursing and physician presence. There are some additional costs for imaging studies, and medication as necessary, but at this point in our stay, I don’t expect to exceed an additional $5K for the entire 3 months (travel included). Given that Gabriel’s 3 month stay in a rehab hospital was in excess of $600K, I don’t think the costs are exorbitant.
    • Each patient is given somewhere between 6 and 9 procedures throughout their stay, in addition to the daily injections based upon their progress and particular disease/injury. The physicians, nurses and Physical therapists follow closely (relative to the diligence of each, as anywhere) any new activity or changes, and it is this that informs as to the next and most appropriate procedure to follow.

    I do not know if this is new information for you, or if it is of any benefit. We continue to be hopeful for any additional benefit, to which my son has already received some…even in the last few days, he is seeing some return in his Pec major on the right side during my additional exercises with him. If we were to see some recovery at one stage below injury, I believe that would constitute a worthy investment.
    If you would indulge one last question, I would ask this; what is the responsibility of a physician across national borders to follow a patient’s progress? Is there a standard of practice and does it or does it not follow the same sop for any practicing physician in the states?...The hand off from one to another, which in my experience is not always as fluid as I would expect?
    Thank you again for your consideration


    Originally posted by Wise Young View Post
    roadreck,

    Thank you so much for your very thoughtful and long post. I appreciate your thoughts and do not want to do anything to discourage you or your son. I also hope very much for his continued recovery. Therefore, I don't want to argue for or against the safety and efficacy of the therapy that your son is now receiving. Let me, however, address the issues relating to clinical trials and conflict of interest.

    Without first hand experience, I can only rely on press and other reports of Geeta Shroff's work. From press reports, posts by people on this forum, and also interviews of several people that received therapy from Geeta Shroff, the following have been clear:
    • Geeta Shroff is not doing a clinical trial. She is delivering a therapy that she claims will cure people and that is safe. I don't believe that what she is doing has been approved by any regulatory agency.
    • She is making claims of efficacy and safety without publishing any data to support the claims, without having a regulatory agency review the data, and without obtaining assessment of the data by other doctors.
    • She charges exorbitant amounts for the therapy. I estimated $500/injection because one person that I know spent $82,000 for 3 months of therapy and had about 160 injections. Please correct me if I am wrong.

    I do not trust what Geeta Shroff says about the therapy because she has a serious conflict of interest. Not only is this cell transplantation "her therapy" but she has a financial conflict of interest because she charges patients large amounts for the therapy. I assume that her clinic is financially dependent on the income from the therapy. She therefore has strong motivation to say that the therapy is safe and effective, even if it is not. Unfortunately, we will probably never know whether the therapy is effective or not. Because of the way she is handling the situation, she is unlikely ever to achieve the trust of the medical community in India or around the world. This is sad because, if her therapy is safe and effective as she claimed, it could be used to reduce suffering and save the lives of millions of people. At best, she can perhaps treat another 10,000 people in her lifetime.

    You suggest that I receive payment for my research and that Geeta Shroff does also. I respectfully suggest that the situations are not comparable. The clinical trials that I organize do not charge patients for the treatments or participation in the trials. Yes, I receive a salary as a tenured and endowed professor at Rutgers University for my teaching and research. I do not receive any payment for any of the clinical trials or networks that I organize, from any of the companies that contribute therapies for the trials, or from any of many spinal-injured people and families who participate in the trials or ask me for my opinions. I volunteer my time and effort for organizing the clinical trials. I pay for my own expenses, including my travel, lodging, food, and communication costs associated with all my work for the clinical trials. In addition, I personally donate substantial amounts (more than $10,000) every year to support the research and the clinical trials. While we are asking people to support the clinical trials by donating $1 a day to the http://JustADollarPlease.Org, the funds go to Rutgers University where they are used solely to support the activities of the SCINetUSA.

    You may want to ask why I am so careful. I am a director of ChinaSCINet and SCINetUSA, with responsibilities for helping shape decisions on what therapies will be tested in the trials, I want to avoid any possible conflict of interest. So, for example, I do not own stock or receive any payments from Stemcyte, the company that is contributing umbilical cord blood cells for the trials. I give them advice for free, like I do here on CareCure. They may choose to heed my advice or even claim that I am their advisor, but they don't pay me for the advice. Whether the therapy works or does not work in the trial, I can recommend for or against the therapy without conflict of interest. My interest is solely to find therapies that are safe and effective. I will not be making money from any of the treatments that will be tested in the trials. I do not depend on the clinical trial funding for my laboratory research. All this is because I want to be credible when we present the results of our clinical trial.

    The goal of clinical trials is to demonstrate safety and efficacy so that many doctors will apply the therapies to many people.

    Wise.

    Comment


      #17
      Hi roadreck,

      Sorry about your son.

      I believe I've read statements from a couple previous patients that they are told that it takes 3 or 4 months to see the full results of an injection of cells.

      Were you told this or have you heard it from patients u talk to?

      TIA
      http://justadollarplease.org/

      2010 SCINet Clinical Trial Support Squad Member

      "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

      .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

      Comment


        #18
        Originally posted by Leo View Post
        Hi roadreck,

        Sorry about your son.

        I believe I've read statements from a couple previous patients that they are told that it takes 3 or 4 months to see the full results of an injection of cells.

        Were you told this or have you heard it from patients u talk to?

        TIA
        Leo,
        I have seen the whole spectrum here. My son had movement back in his right hand (primarily thumb extension and some wrist deviation) within the first two weeks. He has also seen some modest improvements since then... pec and tricep (ability to hold a press for about 5 to 8 seconds...had nothing prior to tx) , improvement in breathing, and ability to push urine. I've met a few folks who saw more improvement after they returned home (here for second and third time), but most everyone I've met so far (upwards of 20 or so) have had some improvement. There is one gentleman who's still waiting to see something after 6 weeks. The SCI folks here range from 4 months post injury to 20 plus years. As you can imagine there is a strong sense of community and camaraderie here, and everyone is keenly attuned and interested in the changes that are happening.
        The clinic folks do suggest to the patients that it takes time, and they need to focus on PT/Exercise because they should expect to see improvement after they have returned home.
        Thanks for asking

        Comment


          #19
          Man.. Those improvements are pretty big. A number of people I talked to say there is some Improvement after a treatment but they contribute it to spending 20-40 thousand dollars and therefore must have something to account for. Do you believe your son will have functional improvements after this is done? You said he has the ability to push urine? Does that mean he can start or stop voiding? TYI also I wish you guys the best!
          Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
          CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

          Comment


            #20
            What kind of person profits from the pain of others. how can you call yourself a doctor and give useless treatment for thousands of dollars. If there was even the slightest bit of truth to any of this she would win the Nobel peace prize. Her actions are reprehensible, criminal, and she should be given the same treatment as they would in China. Execution. I'm sorry if these words are harsh. But with our short life Spans as spinal cord injury survivors, exploiting us is unconscionable.
            Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

            Comment


              #21
              Originally posted by jhope View Post
              Psycho babble... If there was even the slightest bit of truth to any of this she would win the Nobel peace prize. Psycho babble... .
              Actually it wouldn't it be the prize in Medicine? Not that I give a shit about your f'ing loser rant. By all means go ahead and spew shithead. There was a conversation going on here with adults talking - can't handle that?. What I find unconscionable are thread hijackers ranting on with their feeble minded opinions and summary calls for execution. But hey, that's just me. Stay classy there jhope.
              ______
              Awe at my magnificent coq!

              "You may say I'm a dreamer
              but I'm not" - J. Lennon

              Comment


                #22
                Originally posted by eks View Post
                Actually it wouldn't it be the prize in Medicine? Not that I give a shit about your f'ing loser rant. By all means go ahead and spew shithead. There was a conversation going on here with adults talking - can't handle that?. What I find unconscionable are thread hijackers ranting on with their feeble minded opinions and summary calls for execution. But hey, that's just me. Stay classy there jhope.

                first of all i have forgotten more than you will ever know you ignorant pos. keep believing some snake oil Indian doctor miraculously discovered what you think is a cure. 82,000 dollars later and intense pt and you can move your thumb. you people are stupid, dumbass dreamers that could donate to real research instead of that imoral scum bag.

                ps.at 16 months post injury i started to make gains. i went from nothing to assisted walking.
                Last edited by jhope; 20 Oct 2009, 7:45 PM.
                Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

                Comment


                  #23
                  hi roadreck,

                  thanks for the reply.

                  my question was meant as more technical in that do they tell patients we will inject these cells and it will take up to so much time maybe 3 months to see the full impact of improvement?

                  cell survival time line

                  also in your research my guess is you've ran across patients who got no return?

                  TIA


                  Originally posted by roadreck View Post
                  Leo,
                  I have seen the whole spectrum here. My son had movement back in his right hand (primarily thumb extension and some wrist deviation) within the first two weeks. He has also seen some modest improvements since then... pec and tricep (ability to hold a press for about 5 to 8 seconds...had nothing prior to tx) , improvement in breathing, and ability to push urine. I've met a few folks who saw more improvement after they returned home (here for second and third time), but most everyone I've met so far (upwards of 20 or so) have had some improvement. There is one gentleman who's still waiting to see something after 6 weeks. The SCI folks here range from 4 months post injury to 20 plus years. As you can imagine there is a strong sense of community and camaraderie here, and everyone is keenly attuned and interested in the changes that are happening.
                  The clinic folks do suggest to the patients that it takes time, and they need to focus on PT/Exercise because they should expect to see improvement after they have returned home.
                  Thanks for asking
                  http://justadollarplease.org/

                  2010 SCINet Clinical Trial Support Squad Member

                  "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                  .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

                  Comment


                    #24
                    Leo,
                    sorry, I haven't responded earlier. The short answer is no they don't. The long answer is that they suggest that the benefits can be long lasting (time undetermined) especially for the neuronal cells (hematopietic have a short life span...30 days I think).
                    Yes, I have come across a few, some on this forum. There is one gentleman (C5/6) here now who has had minimal effect, but he is also a gunshot injury...close range with lots of burn on the cord...he wonders if this is not related to the limits of the treatment.
                    thanks

                    Comment


                      #25
                      Dr. Young, I'd be interested in a reply to my earlier post to you...whenever you have a chance.
                      thank you

                      Comment


                        #26
                        Patients are notorious for providing incorrect information. This is one of the negatives I have with Geeta Shroff. The Website that was linked above, the patient underwent a neurological exam prior to and after Geeta Shroffs treatment. It is my understanding that the patients own (U.S) Doctor stated no benefit was derived. Yet the patient contends otherwise.

                        Geeta Shroff filed a patent application quite a while back. I was one of the first persons to post the link, as I had been waiting and watching for it. If you want to view the application, providing the link is still up, search my old posts. It was at least a year ago. After the application is filed, I believe the procedure, and the cells are then protected (within the application). Which leads to my next inquiry:

                        Why is it that Geeta Shroff hasn't provided a vial of her cells for independent testing and verification? This to me is a red flag, and highly suspicious under the circumstances.

                        I am not saying that patients won't enjoy traveling to India and seeing the sites. Not even that intense physical rehabilitation that supposedly is provided (by Geeta Shroffs team) is not worthwhile.

                        However, it is my belief that any therapeutic cell with regards to spinal cord injury, must be injected directly into the spinal cord (at, above and below) delivered to the trauma location. To my knowledge, Geeta Shroff does not inject directly into the spinal cord.

                        Comment


                          #27
                          Chasb,

                          I had the so called stem cells from geeta shroff. Queen of scam ! I was ASIA B before I went to her and am still ASIA B . So that is that. She does not inject the so called stem cells in the cord. Infact most of the time it IM or IV. Amanda Boxtel saw some improvements earlier on , but my belief is that it was a placebo effect. In short she is a scam artist and I cannot for the world of me understand why the Indian govt does'nt take her to task .

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