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  • #31
    The completed trial information was published well over two years ago. We'll be interested to see if there is ever further Phase 3 trials undertaken by Pharmicell that is deemed successful for launching a chronic SCI commercial treatment worth purchasing.

    For now, we wouldn't pay anything for unproven potential theories of various dosing schedules on the "chronic" SCI. (It is Pharmicell that must prove their treatment and theories to be correct for chronic SCI in a patient trial and then we'll purchase it with confidence and know we'll be getting a viable product for the $60,000. treatment). That would be a huge amount of money to risk for a treatment that may result in little to nothing.
    Last edited by GRAMMY; 09-13-2017, 09:48 PM.
    http://spinalcordresearchandadvocacy.wordpress.com/

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    • #32
      I'm a little embarrassed to say that due to a misunderstanding on my end I am not having a phone conference meeting with a representative tomorrow. However I am meeting with a translator and a photographer. I am not entirely sure as to why this meeting is taking place but I will be happy to post whatever information is presented if it seems worth while. I apologize for the inaccurate post. Also thank you to those who have taken the time to check this thread out.

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      • #33
        @jaemc, thank you for keeping us informed. I'd take it you are being used as a live test case to later be a sales lead for "world exclusive safe and effective SCI treatment"* (priced exhorbitantly!!). I'm curious what predictions of recovery Dr.Kim will make. In any case, Pharmicell has been grinding away at SCI for years and perhaps this is their method to get ROI.

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        • #34
          Originally posted by jaemc View Post
          I'm a little embarrassed to say that due to a misunderstanding on my end I am not having a phone conference meeting with a representative tomorrow. However I am meeting with a translator and a photographer. I am not entirely sure as to why this meeting is taking place but I will be happy to post whatever information is presented if it seems worth while. I apologize for the inaccurate post. Also thank you to those who have taken the time to check this thread out.
          No need to feel embarrassed! I would be hesitant to let the photographer take any photos unless you know where they plan to post them or what they plan to use them for. Thanks for getting back to us and letting us know what is going on. All information is helpful. Best of luck!
          http://spinalcordresearchandadvocacy.wordpress.com/

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          • #35
            Originally posted by GRAMMY View Post
            No need to feel embarrassed! I would be hesitant to let the photographer take any photos unless you know where they plan to post them or what they plan to use them for. Thanks for getting back to us and letting us know what is going on. All information is helpful. Best of luck!
            I've already run into that mistake fairly recently... I thought the picture was being taken for the doctor but it turned out to be for a news article for the koreadaily. Needless to say I'm not thrilled about it. More-so, I don't know if it was the "translate to english" feature in google chrome or just the way the article was written, but parts of the article are confusing to read. Curious to know if anyone here is able to read korean and translate it?
            Last edited by jaemc; 09-14-2017, 04:15 PM.

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            • #36
              Interesting stuff here. Do keep us posted on all that go's on. And, thanks.
              I refuse to tip toe through life, only to arrive safely at death.

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              • #37
                Originally posted by jaemc View Post
                I've already run into that mistake fairly recently... I thought the picture was being taken for the doctor but it turned out to be for a news article for the koreadaily. Needless to say I'm not thrilled about it. More-so, I don't know if it was the "translate to english" feature in google chrome or just the way the article was written, but parts of the article are confusing to read. Curious to know if anyone here is able to read korean and translate it?
                When was the news article posted? I generally translate articles via Google chrome... I'm curious if the article portrayed you as a recovering patient that is paying for the treatment? Would they have given you a link to it?
                Last edited by GRAMMY; 09-15-2017, 01:11 AM.
                http://spinalcordresearchandadvocacy.wordpress.com/

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                • #38
                  Well... Just met with the translator. We basically met to talk about important and basic information. How many patients have they seen, What were the improvements, Where would I be staying, How long, How would we manage the flight, How will this affect my baclofen pump, etc... He is going ask these questions for us and hopefully get back to us Monday.
                  Grammy... the article was published Aug. 19th, 2017. It reads like a "and in other news" piece.

                  They did not provide a link. My step-sister brought me a printed copy of the article that had the url on it.

                  http://m.koreadaily.com/news/read.as...27077&referer=

                  Couple of lines refer to me as "She". Majority of the confusion lies within the first half. And some parts are a little exaggerated. I'm usually hesitant to share things about my personal life but it's already online so... whatever I guess.

                  I should maybe also note that I was never actually interviewed for this article. It's my understanding that this was told from my biological mother's perspective. Also, also, note... The way the beginning reads... Was it me that was abandoned by my parents or are they talking about my "mother' in question was abandoned. Which would then make me question... when was she going to reveal this to me if I'm not her kid.
                  Last edited by jaemc; 09-15-2017, 04:12 PM.

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                  • #39
                    Originally posted by jaemc View Post
                    Well... Just met with the translator. We basically met to talk about important and basic information. How many patients have they seen, What were the improvements, Where would I be staying, How long, How would we manage the flight, How will this affect my baclofen pump, etc... He is going ask these questions for us and hopefully get back to us Monday.
                    Grammy... the article was published Aug. 19th, 2017. It reads like a "and in other news" piece.

                    They did not provide a link. My step-sister brought me a printed copy of the article that had the url on it.

                    http://m.koreadaily.com/news/read.as...27077&referer=

                    Couple of lines refer to me as "She". Majority of the confusion lies within the first half. And some parts are a little exaggerated. I'm usually hesitant to share things about my personal life but it's already online so... whatever I guess.

                    I should maybe also note that I was never actually interviewed for this article. It's my understanding that this was told from my biological mother's perspective. Also, also, note... The way the beginning reads... Was it me that was abandoned by my parents or are they talking about my "mother' in question was abandoned. Which would then make me question... when was she going to reveal this to me if I'm not her kid.
                    "Kang, who is also a terminal cancer patient himself, was leading various volunteer activities "

                    So, Kang is the contact person acting as a liaison for the stem cell clinic?
                    Is the treatment being paid for through donations collected from the US Korean community and the Presbyterian Church?
                    http://spinalcordresearchandadvocacy.wordpress.com/

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                    • #40
                      Kang is the person who visited Korea on my mother's behalf and brought information back. As far as I'm aware, he is longer involved.

                      The translator (Daniel Shin), based on the knowledge he has; it would be paid for through the clinic/gov't. He will be the person as my advocate seeking out the answers we're looking for.

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                      • #41
                        Can you surmise if this is just a straight up treatment being paid for and promoted by the government (for promoting Korean business) or is the government paying and data is to be collected in an actual trial with multiple people involved?
                        http://spinalcordresearchandadvocacy.wordpress.com/

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                        • #42
                          I'm under the impression that it'd be for promoting business

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                          • #43
                            jaemc, I too am under the impression you are being used as a sales lead.

                            Worth noting Pharmicell's Hearticell product makes a US$19k entry in the Sep-2016 article Why price for cell/ gene therapy products is so high? . Article summarizes the high cost of these treatments due to the factors below of which I can see the bolded ones perhaps being used to charge US$20k per cellgram-SCI packet.

                            1. High cost of manufacturing
                            2. High cost of delivery
                            3. Lack of comparative studies as evidence for reimbursement scheme
                            4. Lack of competition
                            5. Small market size
                            6. Potential for cure (high utility therapies)
                            7. Hunger for ROI

                            Thankfully Dr.Vaquero in Spain is cultivating MSC stem cells and purportedly delivering treatment in their public hospital free for Spanish ppl. Fingers crossed, the EU will uptake his methods and bring costs down. Such parallel competition is hoped will see Dr.Kim present more affordable treatment. He may consider taking customers at a far lower priced to get some ROI while those still untreated customers exist & are interested in his product. Worth noting, Dr.Kim has a Gangham office.. Gangham-style indeed!!

                            Back to jaemc. Am interested in your level of injury, symptoms (complete/incomplete) and what Dr. Kim tells you are achievable results with his Pharmicell MSC stem cells.

                            It's worth asking "how much would this cost if I wasn't paying?" as those numbers I've been quoted ( 3 x US$20) may be just for the cells?? Not sure if it includes the surgery and accomodation for the treatment. In any case, the clinical trials have shown it's safe therapy. So you can only gain from the procedure . . .
                            Last edited by Pauly1; 09-16-2017, 04:50 PM.

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                            • #44
                              Kinda a new territory for me here but if the treatment truly works I would have no moral quarrels with promoting the business but if it turned out to be non-efficious Id be damn pissed to have been the poster child for it. It all depends
                              Does anyone have any literature concerning animal tests with this procedure
                              And honestly if they plan to use me to advertise their therapy id kindly want the the treatment at a reduced rate
                              Last edited by lunasicc42; 09-16-2017, 10:46 PM.
                              "That's not smog! It's SMUG!! " - randy marsh, southpark

                              "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                              2010 SCINet 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

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                              • #45
                                Originally posted by Pauly1 View Post
                                jaemc, I too am under the impression you are being used as a sales lead.

                                Worth noting Pharmicell's Hearticell product makes a US$19k entry in the Sep-2016 article Why price for cell/ gene therapy products is so high? . Article summarizes the high cost of these treatments due to the factors below of which I can see the bolded ones perhaps being used to charge US$20k per cellgram-SCI packet.

                                1. High cost of manufacturing
                                2. High cost of delivery
                                3. Lack of comparative studies as evidence for reimbursement scheme
                                4. Lack of competition
                                5. Small market size
                                6. Potential for cure (high utility therapies)
                                7. Hunger for ROI

                                Thankfully Dr.Vaquero in Spain is cultivating MSC stem cells and purportedly delivering treatment in their public hospital free for Spanish ppl. Fingers crossed, the EU will uptake his methods and bring costs down. Such parallel competition is hoped will see Dr.Kim present more affordable treatment. He may consider taking customers at a far lower priced to get some ROI while those still untreated customers exist & are interested in his product. Worth noting, Dr.Kim has a Gangham office.. Gangham-style indeed!!

                                Back to jaemc. Am interested in your level of injury, symptoms (complete/incomplete) and what Dr. Kim tells you are achievable results with his Pharmicell MSC stem cells.

                                It's worth asking "how much would this cost if I wasn't paying?" as those numbers I've been quoted ( 3 x US$20) may be just for the cells?? Not sure if it includes the surgery and accomodation for the treatment. In any case, the clinical trials have shown it's safe therapy. So you can only gain from the procedure . . .
                                I'm a c4-c5 complete. I do not yet have details in terms of results of other patients they've seen. Hopefully will have that information Monday. I believe they were hoping for 2levels recovered.
                                Last edited by jaemc; 09-16-2017, 10:26 PM.

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