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Whyare people so uninterested in having SCT?

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    #61
    Originally posted by Katje View Post
    it does cost $250,000. Insurance covers it, but not the hotel and food. Some people who couldn't get on the trial can pay. I was told they would do it for 150,000. I know of one man that his church collected money so he could get a SCT in Chicago.
    Please tell me how "Insurance covers" a non-approved procedure. Also tell me how even though you don't meet the criteria for the trial, you are getting it for free as a "professional courtesy" stated in a previous post by you.

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      #62
      Originally posted by Ceremony View Post
      Please tell me how "Insurance covers" a non-approved procedure. Also tell me how even though you don't meet the criteria for the trial, you are getting it for free as a "professional courtesy" stated in a previous post by you.

      Insurance companies and medicare has been paying for the treatment. Many people had this done and it's been paid for. he has been doing this since 1992.

      If I have it done as a professional courtesy I don't have to meet the criteria therefore I wouldn't be part of the trial. I wouldn't be taking the place from someone who needs it in the trial, the people in the trial are having their procedure covered by insurance is the only difference.

      I had a woman take my spot 6 years ago in a trial. It was at John Hopkins and she didn't care and made is known she was taking someones spot and it just happened to be mine. So I know what that feels like. I would never do that to anyone.

      If you're not interested in the treatment I understand, but no need to be so combative to those who want to.

      Let's not turn this helpful thread into a discussion between members who disagree. No one will win such a discussion. MSWorld guidelines state: "1. INTERNET ETIQUETTE: Show respect for others at all times.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #63
        Medicare only pays for HSCT when the patient is APPROVED for a clinical trial. Beyond this criteria, please show me what medical insurance companies cover beyond these boundaries'.

        This is no something we can just ask our insurance co's for.

        As far as the INTERNET ETIQUETTE comment, I have no ill will towards anyone.

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          #64
          Katje, you've had this effer for nearly 20 - you may have the oft spoke of, much dreamed for, probably legendary "benign" MS. Mind you EDSS doesn't equal how you feel, because it's a measure of the visible disability, not the invisible variety.

          If you're game, then I support you.

          I do wonder about the risk vs benefit, though.

          I have to have a stent put across the 'neck' of my brain aneurysm next year, and my interventional neuroradiologist is worried about the 95% success rate. So am I. If it doesn't work, you could have a stroke; you could wind up seriously disabled, or you could die.

          "What happens if I don't do it?", I asked. "You might have a stroke, or you might not. If you do, with your MS the way it is, it will be much worse, in terms of recovery."

          "Is it worth it?"

          "I don't know. it's your choice."

          Yes, well. He's a lovely man. I don't think he'd kill me. Not through negligence, anyway. (Beautiful, gentle, delicate fingers.)

          All the best whatever you decide.

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            #65
            It is not likely many insurance companies would cover expensive medical procedures unapproved by the FDA, nor would Medicare. I have never heard of insurance or Medicare paying for a clinical trial, ever.

            Maybe Katje is aware of participants not having to pay to take part in a clinical trial and assumed insurance and Medicare paid for it, only guessing. I suppose it is possible there has been someone not in a trial whose insurance paid for the HSCT procedure but I would have to believe it a rare occurrence.

            It appears Katje wants to know… if the procedure was free, why would you not do it?

            My questions is… Katje, you said, “I don't see how a worse qol would happen. Hasn't happened to anyone else, it's all been good”. Holding that view and considering your HSCT would be free why would you not do it, Katje?

            Katje asks the question she is trying to answer for herself. No problem, people understand treatment decisions are complex and it helps to get other perspectives.

            In the end Katje you will have to decide for yourself. So far, you have not committed to the point of signing or scheduling for HSCT. Many of us understand because we too have been almost tortured by treatment decisions. Literally. They aren’t easy. My wife depends on me to make those decisions and I try so hard to make the right ones. I love her beyond all possible expression. I’m sure your husband feels the same about you Katje; hopefully you guys can chose together about doing HSCT, or continuing w/o it.

            I appreciated your thoughts, pshrink, and welcome to the conversations. Tawanda, you have good perspective, really good. And, Elizabeth you are perfect. Your diet and lifestyle are perfection for someone with MS, IMO. What a great example for us all. I really hope someday taking an antiviral and adopting a similar lifestyle will defeat MS.

            Thanks to Special Kay, Marco, and Ceremony for keeping comments accountable.

            And a very special acknowledgement to Katje who gets conversation going like no other about topics of the day. Hang in there kid. We are learning a lot because of you. Thanks for asking a question on your mind a lot these days, it is helpful to discuss HSCT.

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              #66
              A different kind of limbo

              I've been thinking a lot about this thread, and I even joined a couple of the Facebook HSCT groups to read what people were saying about it.

              Tawanda makes an excellent post. Who qualifies for this cure? I feel the same about Alemtuzumab or Cladribine--you need it early for best results, but you have to have aggressive disease to get them.

              As someone who doesn't have active disease, I qualify for none of it. I take my shot every day, and my MRIs come back with no new activity. I haven't had any new attacks either.

              Does that make me lucky? Because I don't think it does. I think it puts me in a different kind of MS limbo.

              It means that nobody will give me highly effective treatments. Not even Tysabri.

              Instead, I have to wait for breakthrough disease. And I have to hope that breakthrough disease doesn't cause irreversible damage. And I have to hope I'm not so unlucky that I just go straight to secondary progression without any more lesions or relapses--and then it's too late to benefit from any highly effective treatments at all.

              Didn't some of you with more advanced disease start out with your Interferons and Copaxones and quiet MRIs for some time before all hell broke loose?

              Would I take stem cells given the opportunity? Ehhhhhh...probably not. Too scared. Maybe I would after a couple years of thinking about it and watching people's experiences like yours, Katje. (By the way, I very much appreciate you starting this conversation. It's been fascinating!)

              I would seriously consider Alemtuzumab for me at this point (though no doctor would, of course). I'd even pay out of pocket for it if it means I can shake the MS now. And if I was JVC negative, I'd go to Tysabri without thinking twice about it.

              But so far none of it is available to me. So, I'll just keep taking my shot, do my exercises, take naps, and hope I keep being "lucky" while my disease plots its next move.

              Comment


                #67
                I simply wanted to know why people opt out is all.

                I am doing it. I found an amazing support group on FB of people who had it done or undergoing it.

                I am losing my left leg, not literally but it is becoming weak. Could be a relapse or a progression of the disease. I believe it to be progression because my stoke like attack affected my left side last year and was told my current MRI showed those lesions growing.

                Right now I am going to surround myself with positive people, positive vibes because I need them greatly.
                Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                Comment


                  #68
                  Originally posted by Thinkimjob View Post

                  I have to have a stent put across the 'neck' of my brain aneurysm next year, and my interventional neuroradiologist is worried about the 95% success rate. So am I. If it doesn't work, you could have a stroke; you could wind up seriously disabled, or you could die.

                  "What happens if I don't do it?", I asked. "You might have a stroke, or you might not. If you do, with your MS the way it is, it will be much worse, in terms of recovery."

                  "Is it worth it?"

                  "I don't know. it's your choice."

                  Yes, well. He's a lovely man. I don't think he'd kill me. Not through negligence, anyway. (Beautiful, gentle, delicate fingers.)

                  All the best whatever you decide.
                  Think - all the best to you also, if you do go through with this.
                  You have so much going on -- If I read another post of yours correctly, in June you'll be getting Lemtrada? Or were you jesting? If you are, this will put your MS off radar until the yearly fine tuning!

                  Bree

                  Comment


                    #69
                    Originally posted by Myoak View Post
                    Thanks to Special Kay, Marco, and Ceremony for keeping comments accountable. And a very special acknowledgement to Katje who gets conversation going like no other about topics of the day. Hang in there kid. We are learning a lot because of you.
                    My concern is when patients turn "possibilities" into "absolutes" people tend to get hurt. If HSCT was a guaranteed opportunity to rid ourselves of MS then our home would probably be up for sale. Why? Because my wife loves me and would do anything to improve my quality of life and restore what this disease has taken. If HSCT was guaranteed insurance companies and the government would be opting for the procedure instead of $60k+/annual drugs or the massive SSDI monthly payments. Drug companies would also stop paying tens of millions of dollars in trials since the lucrative disease management was coming to an end. It would seem the professional "bean counters" must have it all wrong if this thread is to be wholly believed.

                    Unfortunately, MS is a disease that can cause extreme disability and even death. This possibility leaves some people desperate and willing to do desperate things. I have seen MS patients regret their decision to have stem cell, CCSVI, bee sting therapy, leeching and other unapproved procedures performed. Some patients only ended up thousands of dollars poorer while others are no longer with us. It appears we are about to have a number of Lemtrada patients in the same boat where some will celebrate improvements and others will become another sad statistic. HSCT has potential incredible benefits, but not without both risks and costs (not all costs are monetary). I believe intelligent people can conclude the pros of HSCT outweigh the cons and vice versa. If the science was conclusive many more people would be opting for HSCT. There is a reason this is a “trial” and not an approved procedure.

                    Even with MS, I love my current life and not looking around the corner or across the fence to a greener pasture. Life is simply bigger than MS. I am just not convinced the possibilities of stem cell treatments outweigh the current risks and costs. Until a HSCT or another therapy matures I will gladly take my current MS medication. I remain hopeful in my currently medication like Katje is hopeful in HSCT. I do not believe either of us is wrong -- just different.

                    I wish you all well ...

                    Comment


                      #70
                      It is scary for me but I feel confident about having this done. Not looking forward to the sickness and pain, but it's temporary.

                      My brother in law is a transplant surgeon at Beth Israel and Dr. Sadiq was my doctor in my late 20's and had me on a controversial treatment, which os why I think my MS was silent do so many years. I went to him crawling on the ground and half blind with double vision. Both said if I was their wife they would want me to do this.

                      I trust both of them and want whats best for me. They know Dr. Burt and the science behind this. They also have the inside track of what the studies have shown and they know the politics. If you're going to get hung up on because it's a trial which is phase III and has been done since 1992 by the way. Look at what has passed, not so promising. This procedure is being done more and more around the world. I think you would be surprised who already had this done, but you'll never hear about it in the media.

                      I am really sorry I started this thread. it seemed to bring out a lot of negativity and back handed insults. Really has turned me off this site. :/
                      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                      Comment


                        #71
                        iF IT WORKED...

                        Originally posted by football-mom View Post
                        I don't because I don't believe in it and it is vastly expensive anyway.
                        Same here; if these things worked, our neuros or the MS Society would be recommending it. Many of these 'cures' are experimental or in the testing phase. I'd like to be excited, but going to wait till it is a certainty.

                        Diane
                        You cannot dream yourself into a character; you must hammer and forge yourself one.

                        Comment


                          #72
                          No jest, Bree. The aneurysm man thinks do the Lemstrada first, (it's approved down here), then do the other.
                          The MS woman seems to agree.
                          It's going to be an interesting couple of years. I'd kind of like to do all of it in an induced coma, so I didn't have to think about any of it. Just wake up, or not, in 2016. (Now I am jesting sort of.)

                          Comment


                            #73
                            Quote
                            Katje wrote
                            It is scary for me but I feel confident about having this done. ...
                            ...
                            I am really sorry I started this thread. it seemed to bring out a lot of negativity and back handed insults. Really has turned me off this site. :/
                            So I lurked on this forum for some time before signing up - just because the discussions did seem to be very balanced, and without any "fanatics" telling everyone that "X" was the only treatment that worked.
                            I have not seen any negativity, just a number of reasons why people would not have SCT.
                            I would not have it done at any price - but then I only have a few years left to live anyway, and I do not waant to lose any of the time remaining.
                            If SCT could wind my EDSS back two years (thats from 6.5 to 1.5) I might just consider it, but would not like to even think of the side effects. Ampyra is a whole lot less expensive than STC, and I rejected that due to the side effects.
                            Saying NO to a newish treatment that is still at Stage III is not being negative, it's called giving it some serious thought.You have made your decision, Katje, and then asked for other opinions - you cannot complain if most of them are not lined up with your decision
                            G

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                              #74
                              Katje, I am glad you started this thread. Of course, some people will be negative, but some will have positive thoughts. The most important outcome of this thread is that it started a lively conversation. Good luck. Keep posting

                              Comment


                                #75
                                Originally posted by Thinkimjob View Post
                                No jest, Bree. The aneurysm man thinks do the Lemstrada first, (it's approved down here), then do the other.
                                The MS woman seems to agree.
                                It's going to be an interesting couple of years. I'd kind of like to do all of it in an induced coma, so I didn't have to think about any of it. Just wake up, or not, in 2016. (Now I am jesting sort of.)
                                So much Think
                                When I watched the interview with Harvey, it was obvious he believes in Lemtrada and it has worked for him. He was very emotional: he wants it available for all MSers. There were other clips of Lemtrada benefactors, but he stood out.

                                Being on this board, we read each other's struggles and we feel empathy - we know. Granted we're all at different stages: this *** MS, our personal lives, etc. but we feel for what everyone is going through.

                                You know, after doing Lemtrada and feeling / doing much better, the stent placement will be a walk in the park
                                In 2016 we expect to see a clip of you campaigning for Lemtrada.

                                Prayers going out to you,
                                Bree

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