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Thread: Paraplegic backing for stem cell trials in New Zealand

  1. #21
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    Quote Originally Posted by GRAMMY View Post
    I cannot fathom someone paralyzed for 18 yrs having a vested interest in making sure no cure is ever found. That's beyond my comprehension.
    I was meaning that he would have no job if a cure came along tomorrow just as the old NZ Spinal Unit director I've meet previously rubbished the idea & the spinal unit staff who look at me like I'm crazy if I mention the word cure during my outpatient appointments. There are many here in NZ (old & new) who won't consider the possibility of nor take part in a cure in NZ that are in chairs.
    My view re "vested interests" isn't confined to NZ, many many articles posted always has opposing views but many aren't opposing the science in a constructive way. Many say more time & trials need to be done before starting human trials or that more funding should be directed towards maintaining lives not offering "false hope" to people. Here in NZ I know that equipment companies charge etc to ACC for their products than consumers "walking" in off the street. They make a profit (as drug companies do) off us not getting better hence having a vested interest.
    Last edited by klj; 01-25-2011 at 03:35 AM.
    The important thing in life is to have great aim, and the determination to attain it.

  2. #22
    Quote Originally Posted by klj View Post
    I was meaning that he would have no job if a cure came along tomorrow just as the old NZ Spinal Unit director I've meet previously rubbished the idea & the spinal unit staff who look at me like I'm crazy if I mention the word cure during my outpatient appointments. There are many here in NZ (old & new) who won't consider the possibility of nor take part in a cure in NZ hat are in chairs.
    My view re "vested interests" isn't confined to NZ, many many articles posted always has opposing views but many aren't opposing the science in a constructive way. Many say more time & trials need to be done before starting human trials or that more funding should be directed towards maintaining lives not offering "false hope" to people. Here in NZ I know that equipment companies charge etc to ACC for their products than consumers "walking" in off the street. They make a profit (as drug companies do) off us not getting better hence having a vested interest.
    Is something being done to expose the problem to New Zealanders then?

  3. #23
    Klj, your take is exactly like most of us have. Wise's trials and Geron's trial for acutes hopefully will start the ball rolling and get these people at least acknowling cure or improvement. Wise believes this and his focuw is on hos trials. We all have to have confidence in Wise and support his trials. We need results for the world to see and baasically embarass some of these people into acknowkedging the trnsaformation fo treatment and outlook of our situation. We need resluts no matter where they come from.
    Thank you for your post

    keeping on

  4. #24
    Well, there we have it. No worries. All will be much better in the future for the entire world.

    "We need results for the world to see and baasically embarrass some of these people into acknowkedging the trnsaformation fo treatment. We need resluts".

    That should work fine keeping on. No need to send advocacy letter to chief executive Andrew Hall in New Zealand afterall...forget suggestion.
    Last edited by GRAMMY; 01-25-2011 at 12:50 AM.

  5. #25
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    From TVNZ

    http://tvnz.co.nz/breakfast-news/con...-video-4002995

    Not sure if patient driven research always are the best, especially if it is the Lima procedure removing ‘scar’ tissue that makes the research base for these trials…

  6. #26
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    Quote Originally Posted by GRAMMY View Post
    Is something being done to expose the problem to New Zealanders then?
    How do you mean? This isn't confined to just NZ... if you are commenting on my views re others in chairs not wanting a cure/the doctors etc not believing it is possible/& the companies supplying equipment...

    Quote Originally Posted by Leif View Post
    http://tvnz.co.nz/breakfast-news/con...-video-4002995

    Not sure if patient driven research always are the best, especially if it is the Lima procedure removing ‘scar’ tissue that makes the research base for these trials…
    Isn't all research "patient driven"? The lady who started the NZ SCS here did so after her husband was injured, he died several years ago & is still determined to help in a cure way not care. Whether or not this trial will be successful, who knows, it's a comprehension trial having both surgical & non-surgical sci's complete the same physio programmes etc which Lima's study was missing. And a major criticism of Lima's was there was no follow up etc. I'm not exactly sure if it is the same Dr Lima's, an exact replica, but it is based on the olfactory cells...
    This video has the former head of the Spinal Units - a rehabilitation doctor - I was talking of earlier & is tied in with another spinal cord injury charity in NZ.
    Last edited by klj; 01-25-2011 at 04:20 AM.
    The important thing in life is to have great aim, and the determination to attain it.

  7. #27
    [QUOTE=klj;1314102]How do you mean? This isn't confined to just NZ... if you are commenting on my views re others in chairs not wanting a cure/the doctors etc not believing it is possible/& the companies supplying equipment...

    How do I mean?

    I thought the discussion was the posted article by Wise Young: "Paraplegic backing for stem cell trials in New Zealand"

    That's why I ask the question.

    Is something being done to expose these problems to New Zealanders?
    Last edited by GRAMMY; 01-25-2011 at 04:28 AM.

  8. #28
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    [QUOTE=GRAMMY;1314112]
    Quote Originally Posted by klj View Post
    How do you mean? This isn't confined to just NZ... if you are commenting on my views re others in chairs not wanting a cure/the doctors etc not believing it is possible/& the companies supplying equipment...

    How do I mean?

    I thought the discussion was the posted article by Wise Young: "Paraplegic backing for stem cell trials in New Zealand"

    That's why I ask the question.

    Is something being done to expose these problem to New Zealanders?

    The original article had a paraplegic backing the research. It also had an opposing opinion of a person from NZ Spinal Trust.

    I don't understand the "problem" you refer too???
    The important thing in life is to have great aim, and the determination to attain it.

  9. #29
    1. The statement by your New Zealand Spinal Trust chief executive Andrew Hall. (Not even sure he's in favor of diverting resources for the clinical trial?) That's not so great for the credibility of a new clinical trial or glowing endorsement for 1 million dollars in funds being spent from the Trust.

    2. Equipment companies charging your New Zealand ACC more than they do people "walking" in off the streets.

    Is something being done to expose the problem to New Zealanders?

    (I assume your more personal viewpoints about SCI people not wanting a cure or doctors not believing in a cure to be less of a huge national problem and more conjecture on your part. I wouldn't use national publicity for any of that... however, 1 million in trust money at stake and the ACC being defrauded would make one wonder if something is being done to expose these issues of national interest to the citizens of your country.)
    Last edited by GRAMMY; 01-25-2011 at 06:25 AM.

  10. #30
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    Quote Originally Posted by GRAMMY View Post
    1. The statement by your New Zealand Spinal Trust chief executive Andrew Hall. (Not even sure he's in favor of diverting resources for the clinical trial?) That's not so great for the credibility of a new clinical trial or glowing endorsement for 1 million dollars in funds being spent from the Trust.

    2. Equipment companies charging your New Zealand ACC more than they do people "walking" in off the streets.

    Is something being done to expose the problem to New Zealanders?

    (I assume your more personal viewpoints about SCI people not wanting a cure or doctors not believing in a cure to be less of a huge national problem and more conjecture in nature. I wouldn't use national publicity for any of that... however, 1 million in trust money at stake and the ACC being defrauded would make one wonder if something is being done to expose these national issues to the citizens of your country.)
    The NZ Spinal Trust is a charity like the NZ SCS. These are separate not connected in anyway so there is no diverting of funding.

    I personally donate to the NZ SCS as their work is towards a cure. The NZ Spinal Trust's work isn't towards a cure & does not benefit me personally as it is based in the South Island of NZ which is why I don't donate to it.

    Donations & grants received by the NZ SCS are given due to their nature of work I believe, so would not necessarily be given to the Spinal Trust instead. The $1M "at stake" has been raised & given for the purpose of this trial... by the Spinal Cord Society. The trust is not involved in this trial, for the purpose of the article they were obviously asked for comments. I don't qualify for this trial as I'm a quad & been injured to long but I have an interest in it's results & possible benefits towards a cure so I support.

    Re: ACC this is a government department which follows government policy & procedure. For example for me to get a new cushion cover, I contact my ACC case manager they arrange an OT to assess whether the need for a cover exists, if there is a report is written & the case manager grants a request for purchase, the cushion cover is purchased from (usually) an overseas company & then supplied to a NZ company who then sends it to me... each step costing more than if I was to contact directly the cushion cover company & it being sent to me. For ACC to fund equipment this process must be followed.

    How easy is it in your country to change government policy?

    Regarding my view of others in chairs & medical professions thoughts of a cure - have you not read many articles (even on this site) into cure research with opposing views from others saying more time needs to be taken &/or put into care not cure or that they are happy with their life & people should concentrate on living than on a cure?
    Last edited by klj; 01-25-2011 at 06:34 AM.
    The important thing in life is to have great aim, and the determination to attain it.

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