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  • Where Are the Cures?

    Where Are the Cures?

    Sharon Begley

    Newsweek
    Published Nov 1, 2008
    From the magazine issue dated Nov 10, 2008

    It has been years since Hans Keirstead worked his biological magic, injecting stem cells into rats with severed spinal cords and thus making them walk almost normally. But the real miracle—since other experiments, too, have cured paralysis in lab animals—is that Geron Corp. plans to test the technique in people next year. Between Keirstead's experiment and Geron's trial lie these obstacles: Keirstead, a professor at the University of California, Irvine, had to invent instruments to squirt the stem cells into spinal cords ("what do we academics know about developing medical devices?" he asked me), find someone to try the technique in monkeys ("I know two researchers who handle monkeys; you have to get in line"), ramp up production of the stem cells ("it meant going from pipettes to this massive hydraulic setup") and … well, more industrial-strength biology that he wasn't trained in, that the government rarely funds and that brings exactly zero glory to a university scientist. "We hacked through the jungle and paved the road," Keirstead said. "But how many others are willing to do that?"
    Going by how few discoveries in basic biomedical research get turned into treatments and cures, the answer is very, very few. The nation's biomedical funding and training system are set up to do one thing, and they do it superlatively: make discoveries. That is what scientists dream of, that is what gets them published in leading journals (the coin of the realm in academia) and that is what gets them grants from the National Institutes of Health. Here's what doesn't get them any of those: the grunt work that Keirstead did to turn his spinal-cord breakthrough into something that can be tried in patients.
    These barriers to "translational" research (studies that move basic discoveries from bench to bedside) have become so daunting that scientists have a phrase for the chasm between a basic scientific discovery and a new treatment. "It's called the valley of death," says Greg Simon, president of FasterCures, a center set up by the (Michael) Milken Institute in 2003 to achieve what its name says. The valley of death is why many promising discoveries—genes linked to cancer and Parkinson's disease; biochemical pathways that ravage neurons in Lou Gehrig's disease—never move forward.
    The next administration and Congress have a chance to change that, radically revamping the nation's biomedical research system by creating what proponents Richard Boxer, a urologist at the University of Miami, and Lou Weisbach, a Chicago entrepreneur, call a "center for cures" at NIH. The center would house multidisciplinary teams of biologists, chemists, technicians and others who would take a discovery such as Keirstead's and nurture it along to the point where a company is willing to put up the hundreds of millions of dollars to test it in patients. The existence of such a center would free scientists to go back to making important discoveries, not figuring out large-scale pipetting, for goodness' sake. "There is a sense among disease philanthropies that something like this is what needs to happen," says Katie Hood, CEO of the Michael J. Fox Foundation for Parkinson's Research. "It's a huge opportunity for a new administration."
    Biomedical scientists I spoke to are wary of using NIH money for a new center for cures. They worry that it would divert dwindling funds from the basic research that is their pride and joy and, indeed, the basis for those hoped-for cures. Given current fiscal realities, scientists are right to be worried. But while basic research is necessary for finding new treatments, it is not sufficient. (While the NIH budget was doubling, the number of new-drug approvals fell from 53 in 1996 to 18 in 2006.) When I asked Kierstead if he ever wondered how many promising leads are gathering dust between the covers of research journals because no one is willing or able to push them forward, he said, "I don't wonder. I know it's the case." Why? Because "curing disease is a byproduct of the [NIH] system and not a goal," says FasterCures' Simon. Most scientists don't want to and don't have the skills to translate a discovery into a treatment; researchers at a dedicated center would try to do that full-time.
    Some disease foundations have paved the way, turning themselves into mini-centers for cures. The pioneering Myelin Repair Foundation, which funds research on treatments for multiple sclerosis, actively manages the five scientists at five universities...

    http://www.newsweek.com/id/166856

    Sharon Begley does a nice job pointing out some of the issues on the path to a cure.
    Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
    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.

  • #2
    they know how to cure all kinds of animals in all kind of ways... its crime against humanity on how they are holding back for humans...

    Comment


    • #3
      Let's get involved and write our members of Congress about Begley's idea of a "center of cures" in the NIH. Sounds like a good proposal and just maybe when our new administration takes office in January, there might be sufficient support for something like this.

      Comment


      • #4
        Originally posted by DA View Post
        they know how to cure all kinds of animals in all kind of ways... its crime against humanity on how they are holding back for humans...
        DA, I think we agree that the system is holding back progress. On the other hand, what are the risks of moving too fast? Harm or death to the participants and bad press for researchers in the event of catastrophic failures.

        There should be efforts to speed good research through clinical trials. But would you agree that there need to be some controls in place so people are not participating in research that is not ready to be tested on humans?

        As mentioned in the article, Kierstead realizes the NIH is not cure oriented, it is basic research oriented. Steps need to be taken to change the system and the NIH to help research move through human clinical trials to the goal of cures.
        Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
        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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        • #5
          FasterNow,

          This is a great article explaining the problem.

          The N.I.H will be getting a new director. In Advocacy/Legislation Forum I posted some links.

          I emailed my thoughts to this lady, Kelli Carrington, carringk@mail.nih.gov

          She's like the head of consumer committee that reports to director, I think

          she should be sent this article for board distribution.
          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


          • #6
            Ill sum it up for you theirs no money in the cure it's only worth two hundred and forty million dollars till we can all band together and put are money into the cure and not another building you can forget the cure . The cure is in your hands exercises !!
            Don't get me wrong someday I hope it will come but since i've been injured i've heard bout this cure every year next year or the year after that or where going to do start next year it all a bunch of bull and if we did get the cure more then half wouldn't benafit from it cuz they were waiting or the cure and didn't exercise move it or loose it . I heard it all on hear all the criers and all the winers bla bla bla do something for yourself get off your ass and try !!

            Sorry had to let that out .


            Ask yourself one question think about how many thing were cured in history, not many

            Comment


            • #7
              look at the top of this of this site whats it say trial for o7 it's almost 09 guess what it will say that the next year to and the next . so all you can do is exercise and try it's not the cure but it all we can do . if we all get smart will put are money together and buy the cure .

              Comment


              • #8
                I know the answer to fix this paralysis thing is out there and doctors know how to do it but god damn it, how much fuckin longer is it gonna take to bring it out? I been donating money, spreading the word and I'm still hearing 3-5 more years. I don't think I can wait that long, 4 real! Man there's too much shit I ain't done yet, I got a 2 year old and an year old who need their dad, and a drop dead gorgeous pin up model wife, that I can only look at. This shit is for the birds man. If these scientists and doctors can do it in these lab animals then I'm willing to give one third of my settlement to fix me. I don't mind doing the oral deed, but damn I'd love to feel the feeling of just cumming again. I want to walk to the bathroom and just hop in and out of the shower, get dressed and hop in the car and just take a long ride. I mean all these funding issues I'm sure there's a doctor out there or a scientist out there who would just take this 500 thousand cash money and just give me a spinal tap or whatever it is they do and send me on my way to get back to living! Fuck worrying about getting into trouble because i ain't gonna say shit to anybody, I mean I just want my life back. I'm just venting my frustrations right now, but believe me, I got the money on deck, no checks, straight cash. A half a million dollars cold hard cash. Like I said, I don't think I can wait another couple years. I don't want to wait another day let alone some odd years. I mean please, if the answers out there, then please lets bring it to light. We deserve this!

                Comment


                • #9
                  I know of a little old lab in Colorado that could make the best use of your cash Honestly, we have to get behind the Science if we want the results to come down the line. I know your frustration, I live it daily believe me. If we want to benefit, we must keep in shape, do the research, spread awareness and try to channel as much money as possible. Forget and ignore predictions by people who are guessing at best. If we want it sooner rather than later, we know what we have to do.

                  It will happen, don't let anyone tell you otherwise.

                  Comment


                  • #10
                    Originally posted by Han Solo View Post
                    I know the answer to fix this paralysis thing is out there and doctors know how to do it but god damn it, how much fuckin longer is it gonna take to bring it out? I been donating money, spreading the word and I'm still hearing 3-5 more years. I don't think I can wait that long, 4 real! Man there's too much shit I ain't done yet, I got a 2 year old and an year old who need their dad, and a drop dead gorgeous pin up model wife, that I can only look at. This shit is for the birds man. If these scientists and doctors can do it in these lab animals then I'm willing to give one third of my settlement to fix me. I don't mind doing the oral deed, but damn I'd love to feel the feeling of just cumming again. I want to walk to the bathroom and just hop in and out of the shower, get dressed and hop in the car and just take a long ride. I mean all these funding issues I'm sure there's a doctor out there or a scientist out there who would just take this 500 thousand cash money and just give me a spinal tap or whatever it is they do and send me on my way to get back to living! Fuck worrying about getting into trouble because i ain't gonna say shit to anybody, I mean I just want my life back. I'm just venting my frustrations right now, but believe me, I got the money on deck, no checks, straight cash. A half a million dollars cold hard cash. Like I said, I don't think I can wait another couple years. I don't want to wait another day let alone some odd years. I mean please, if the answers out there, then please lets bring it to light. We deserve this!
                    half million... a company making multi-millions on selling medical products to you would
                    pay a lot more to keep that treatment 3-5 years away every 3-5 years....

                    Comment


                    • #11
                      I hear you, this is one of my not so good days and I had to get that out. Thanks for helping me get my focus back.

                      Comment


                      • #12
                        Originally posted by Han Solo View Post
                        I hear you, this is one of my not so good days and I had to get that out. Thanks for helping me get my focus back.
                        I think we are entitled to be fed up and pissed from time to time. I also think it is healthy to blow some steam. And you are right; this SCI thing is big shit. But don’t give away you’re own money. There are ways to get money and support from other channels if we look hard enough. Last week a few of us over here managed to get around 430 thousand US dollars from such sources (and we are after more). You’re own money, you and you’re family will need. And sorry for you having a bad day. But keep at it.

                        Comment


                        • #13
                          Heads up Han! theDarthofhopelessness, is getting a lightsaber so far up his .....
                          Sooner than we think!
                          "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

                          Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
                          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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                          • #14
                            Did you guys read that? It's something I have felt for years now, most research groups don't have the ability to move a project from discovery to real medicine that is needed and useful. The whole system is set up to support research not a cure, The government, univeristies and the PRIVATE FOUNDATIONS, enough is enough.

                            The private foundation funding should be going to move all ready existing "discoveries" to a "cure" no one else is going to do it. Why spend more on research when there is stuff layinfg around in dusty folders that's proven to work....I'm mad and frustrated as hell. Have you read the post by Steve Edwards that lists all the on going research? I bet 99.9% of that never leaves the lab.This has to change.

                            I've said it before and I'll say it again, Hans Kierstead is the man, a true Maverick, he's going to make a huge difference, watch and see. He should be getting every dime we can throw at him, he has the ability to do what most can't and that's to get a treatment to you......

                            Comment


                            • #15
                              Originally posted by rjames
                              Did you guys read that? It's something I have felt for years now, most research groups don't have the ability to move a project from discovery to real medicine that is needed and useful. The whole system is set up to support research not a cure, The government, univeristies and the PRIVATE FOUNDATIONS, enough is enough.

                              The private foundation funding should be going to move all ready existing "discoveries" to a "cure" no one else is going to do it. Why spend more on research when there is stuff layinfg around in dusty folders that's proven to work....I'm mad and frustrated as hell. Have you read the post by Steve Edwards that lists all the on going research? I bet 99.9% of that never leaves the lab.This has to change.

                              I've said it before and I'll say it again, Hans Kierstead is the man, a true Maverick, he's going to make a huge difference, watch and see. He should be getting every dime we can throw at him, he has the ability to do what most can't and that's to get a treatment to you......
                              The problem(s) is the chasm/abyss from the lab to clinical trials, a major problem. Rick is the watchdog over Hans, and he knows what he's talking about. Hope others are listening.

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