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Thread: Who is accountable??

  1. #1

    Who is accountable??

    We often discuss the various reasons for the perceived lack of progress: regulatory and financial hurdles, scientific barriers, patents, high-risk high-cash-burn etc etc

    However, what we dont often talk about is accountability.

    a) Who is accountable for translating science from the bench to bedside?

    b) Who is accountable to engage with regulatory bodies?

    c) Who is accountable for designing and running clinical trials?

    d) Who is accountable for delivering eventually approved therapies to the masses?

    Discuss.

    Fly Pelican Fly

  2. #2
    I don't think there is much if any accountability. The best I can tell is that the SCI research community has a "just do the best with what you've got and hope for the best" accountability structure. I'm not trying to criticize here it is just my opinion of where things are at.

    Also, I don't know if there are enough of us to make it worth launching an all out assault on curing SCI related conditions. I mean in the US, there might be 200,000-400,000 chronics out of 312 million (1 in ~1,000).

    Breast cancer, HIV, etc at least have the numbers to demand some accountability.

  3. #3
    Quote Originally Posted by Patton57 View Post
    Also, I don't know if there are enough of us to make it worth launching an all out assault on curing SCI related conditions. I mean in the US, there might be 200,000-400,000 chronics out of 312 million (1 in ~1,000).

    Breast cancer, HIV, etc at least have the numbers to demand some accountability.
    The number of individuals might not be as high as other pathologies, but the financial burden on society should not be neglected in times of austerity.

  4. #4
    Senior Member lynnifer's Avatar
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    It will cost more (wouldn't it?) for a potential treatment and the resulting rehab afterwards (plagued also with infection and pressure sores and a myriad of new problems and new equipment).

    I think the bottom line here is money ... and we're simply not worth the investment. Black and white. I don't agree ... but that's how I perceive it.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    Quote Originally Posted by Fly_Pelican_Fly View Post
    The number of individuals might not be as high as other pathologies, but the financial burden on society should not be neglected in times of austerity.
    Some might argue that the SCI population creates a lot of opportunities for others to have jobs as caregivers, medical personnel, equipment producers, cure seekers, ... as opposed to being a burden to society. Caring for us puts food on the tables of a lot of folks I imagine.

    Some have argued on this site that we're more valuable in the state we're in than a cured state. Obviously, we're more valuable to society not having SCIs but our current economic systems (capitalism, socialism, ...) need someone to play the part of the lowest of the low (or slave to their circumstances) that everyone else can feed on.

  6. #6
    we ask the doctors why isnt there anything, they say because we don't work hard enough or raise enough money. So it seems we blame them they blame us.

    I also think theres a chicken and the egg effect. people give money nothing happens then they stop then doctors say not enough money. was the lack of money the problem or the lack of results?

    I think the whole approach to research is too costly and too inflexible. imagine spending 100's of millions to just see if something works then it fails and having to start all over funding wise to try and fix it again. you couldn't fix a toaster like that much less a spinal cord.

    in times of austerity you don't stop you cut the fat and work more efficiently, which seems impossible atleast to our researchers or our research community...

  7. #7
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    The reason that the global SCI numbers are relatively low, approx 2.5-3 mill, is because people with SCI in larger Asia, Africa, parts of former East Block countries and South America simply dies after a short time, especially tetras. They don’t even get the chance for simple care before they dies. To put real cure efforts on the global agenda will also help future SCI peoples in those pleases by highlighting the need for therapies and follow-up. Nobody, not WHO, no politicians, nobody discuss this in one single paper or anything what so ever. Who is accountable for this? Us, all of us living in the West who has the means and power to push this if we want to. Talk about life expectancy... Life expectancy for SCI in a global setting is very low.

  8. #8
    You ask some good questions Mr. Pelican.

    You've kept me up much later than I wanted to be and even made me stop drinking after I already had a good buzz on in order to answer your excellent questions.
    Thanks for always giving us good mental exercise. Some of us exercise our bodies to get ready for cure, but you my friend always make us exercise our brains so that cure will come.

    Is accountable the same as responsible? They are similar and maybe a little different. So I'd like to talk about that difference.

    I would say that in the case of responsibility, the inflicted and their government are the most responsible for all four of your points, and this is because both parties can be kept accountable.

    Both government and the inflicted can be kept accountable based on the fact that they are the ones who carry the major economic and human costs of sci.

    Cure has been privatized, well, the potential profits have been privatized, while you and me still foot the major part of the bill.

    I say that we are not dealing with an economic problem of not being enough people. We are only a small population when looking at potential profits from cure. In terms of our 'burden' on society, our small numbers actually cost a disproportiate amount.

    We are not dealing with an economic issue, but rather an ideological issue in the sense that government believes that the cost of not curing spinal cord injury is not greater than the cost of cure and therefore let others take the potential risks and profits.

    Here are some examples.

    1. Geron. They didn't think of embryonic stem cells all on their own. They basically bought an idea from someone who had received loads of money from public entities to research the work. The loss studying the basic science was funded by us, and the potential profit was privatized to Geron. Still, people thought, great, that's the way it should work, Geron will bring it to market. Well, they tried, but when it looked harder than they thought (not the science, meaning that they would have to expend huge amounts of money before even seeing a nickel) they gave up and people crticized Geron. But why? They're a private company and their goal is to make money for shareholders, not curing sci. We wouldn't criticize cats for eating mice, would we?

    2. Acorda
    We have one of the main scientists from a university (which always receive public funds) say that ch'ase should go to trials within the year. Then we have the company who owns the use-patent and thenselves bought it from a researcher at a university (again receiving public funds to carry out the research), say that they think three years. Well, three years is like saying never.
    Again, we complain about Acorda. But their job is not to cure sci, their job is to make money for their shareholders. So why should they be accountable to us. It's theirs. They own it.

    3. Rick Hansen Foundation
    My favourite topic. He takes 117.5 million from the government over the last 25 years, and when we ask Him about His plans to cure chronic spinal cord injury, He tells us that when we raise as much money as Him, we can spend it our way. Again, public money which has become privatized and now the private foundations feels that they do not have to be accountable.

    So, who is the most responsible to cure sci. It's you, me, and our governments because we are already bearing the brunt of the costs.

    Do I think that there is a group of people standing the way of cure because care is more lucrative? No, I don't. I just think that the trend to privatize everything, is at the heart of the problem.

    Once privatized, there is no accountability to the government which funded the major basic research nor to us who paid for it and suffer the physical consequences of paralysis.

    so, on all four points, I would argue that currently no one is accountable, but the most responsible parties, government and us, are not doing our part. We cheer for government funding and the companies that wish to privatize cure and bring it to trials. Then we jeer regulatory agencies which is the government and curse them for not allowing translation.

    If we bring this full circle, we can see that the middle man, private companies (and private patents which were funded on our backs), are actually the problem.

    So, if I were the government, and I am because I vote and pay taxes, what would/should we do?

    That's the question I will also open up to discussion while I think and sleep at 0130 in Osaka, Japan.

    And if I've made any factual mistakes, please correct me as I'm always happy to learn more and I don't cry so easily.
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  9. #9
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    Who is accountable

    Hello,

    Well, it seems that a few of us have been reading my posts or thinking on their own. Perhaps a few of us paralyzed and finally gotten fed up with waiting for a chronic cure.

    Congratulations. Now we can discuss the reality of our situation. Some say that our problem is financial others believe that our problem might be political. I believe all of both points of view. Financial impact we do not control our own money and our own agendas. Political perhaps because of the latter of those two.

    SCS is the only charity I know of (not including this one) that directs its own agenda. We have our own center where we are pursuing the chronic cure. We made excellent progress and during this past month we publishED a research report denoting the curing of rats when combining a stem cell treatment (AUTOLOGOUS - NON REJECTING) along with stimulation of the central pattern generator which is present in all mammals, including humans. The goal is to humanize the treatment ASAP and to try that as a method for a chronic cure. Our individual volunteer chapters raise money toward funding our own center and our own agenda.Chuck Carson, whom some of you may have heard, died this past January after 30 plus years of a seeking a chronic cure. His life did end before such a cure was found however we live on. We can simply take more cruel medical treatment or we can fight for a cure. We as a group will decide our fate. What will it be?....

    Futurewalk
    Futurewalker

  10. #10
    Quote Originally Posted by futurewalker View Post
    Hello,

    Well, it seems that a few of us have been reading my posts or thinking on their own. Perhaps a few of us paralyzed and finally gotten fed up with waiting for a chronic cure.

    Congratulations. Now we can discuss the reality of our situation. Some say that our problem is financial others believe that our problem might be political. I believe all of both points of view. Financial impact we do not control our own money and our own agendas. Political perhaps because of the latter of those two.

    SCS is the only charity I know of (not including this one) that directs its own agenda. We have our own center where we are pursuing the chronic cure. We made excellent progress and during this past month we publishED a research report denoting the curing of rats when combining a stem cell treatment (AUTOLOGOUS - NON REJECTING) along with stimulation of the central pattern generator which is present in all mammals, including humans. The goal is to humanize the treatment ASAP and to try that as a method for a chronic cure. Our individual volunteer chapters raise money toward funding our own center and our own agenda.Chuck Carson, whom some of you may have heard, died this past January after 30 plus years of a seeking a chronic cure. His life did end before such a cure was found however we live on. We can simply take more cruel medical treatment or we can fight for a cure. We as a group will decide our fate. What will it be?....

    Futurewalk
    I think you made an excellent post, but at the same time you didn't anser Mr. Pelican's question.
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

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