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Home  /   Forum   /   BioPharma   /   INSM - Insmed - Deel 16

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INSM - Insmed - Deel 16

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1.439 Posts
Pagina: «« 1 ... 63 64 65 66 67 ... 72 »» | Laatste | Omlaag ↓
  6. [verwijderd] 11 april 2009 14:33
    Je zou toch denken met zoveel awards en aandacht....
    www.indestructiblefilm.com/awards_the...

    Thursday, March 12, 2009
    Is it a conspiracy?

    I am really trying to grasp onto the whole Iplex debate. It makes no sense and it is affecting lives in an incredibly negative way. Here it is in a nutshell.

    Ben took a drug for about 2 months called Iplex and had some interesting results. He felt his muscles move in ways he hadn’t for a long time. He tried many different therapies or treatments, basically anything our dad shoved at him, and he was fairly aware of his body’s reaction to something.

    Shortly after he started taking it, the pharmaceutical company that owned the patent took Iplex off the market and it was caught up in litigation for several months due to a patent lawsuit. Ben was given a different drug called Increlex. While it may not be inferior for Short Growth Stature, what both drugs were developed for, it did not work the same as Iplex and Ben could feel the difference. Here is the story that Ben wrote in the midst of it all.

    The Fastest Sailboat in the World

    Come July 3, 2008, over a year from when he took Iplex, and Ben died after complications to the diaphragm pacemaker surgery that he had undergone 3 days earlier. No one can say if Ben would have survived had he been able to continue taking Iplex but he should have had the opportunity to find out.

    Now March 2009, almost 2 years to the day that Ben premiered the film at Cinequest where he won the Jury award for Best Feature Documentary. When he heard the presenter describing the award, he said later that he thought there was another movie about ALS at the festival that he missed. Two years have gone by and ALS patients still do not have access to Iplex.

    In November, my parents helped organize a march on Washington to protest and raise awareness for ALS and Iplex. Two days before the march, the pharmaceutical company finally decided that public health was more important than their pocketbook and Genentech released Iplex to be used for ALS patients. So finally, after countless letters, emails and phone calls, ALS patients will be able to try a drug that is apparently safe and non-invasive. If their insurance companies will not pay for it and they can’t afford it, other companies or individuals will. Win-win situation, patients can see if it works and maybe someone will have found a cure or effective treatment for this horrific disease.

    But wait. The FDA needs to approve this specifically for each patient. Patients must fill out an IND (Investigational New Drug) form. My mom tells me how she is putting together these packages for patients to send to the FDA. It takes her an hour for each one, and she is pretty efficient with her system now, much easier for her than for many patients. So ok, not that big a deal. The FDA has to cover their asses because the drug was not developed for ALS and they are worried about lawsuits of course.

    So then we think things are really turning around and patients can try the drug, which by the way, is safe for infants with short stature, so one would assume it is safe for adults who have ALS. But no, that would be too easy. The FDA has rejected the IND’s for two reasons which are not only false and invalid, but seem to be the makings of a conspiracy. Why is the FDA standing in the way of these patients? I understand that there needs to be a system and people can’t just take whatever drugs they want. But if they have a physician write a prescription, there is no apparent downside, and they are willing to take the risks, why shouldn’t they? They have been given a death sentence, what do they have to lose?

    There are other factors at hand here as well. There are many doctors who are not only avoiding the Iplex issue, but some are actually interfering with their patients right to be proactive about their care. My theories are many, but a few come to mind: insecurity, the inability to have a patient know more than them; Money - are they being paid by someone with an evil plot to rule the world? Is it an episode of Heroes? Perhaps it just simply has to do with power and greed. Are they control freaks who can’t handle it if they aren’t the ones to find the cure for ALS. Whatever the answer, it is sick and twisted and it is affecting people’s lives all over the world.

    Have doctors given up? Do they just think that ALS can never be cured and there is no point in trying? Someone has to be the first and it can be your brother, your friend, your mother, it can be anyone and we are all susceptible.

    There has been a recent update to the Iplex issue, one that came up before I even got a chance to post this blog entry. According to Reuters, the FDA will allow the patients who submitted their IND’s before March 6 to be able to take Iplex. Apparently there is a limited supply…..read the article here. I guess nothing comes without a price.
    www.indestructiblefilm.com/awards_the...
    indestructiblefilm.com/blog/

    Succes, F.
  7. ludwig mack 11 april 2009 18:40
    quote:

    psycho-pharma schreef:

    [quote=crackedtooth]
    INSM Expanding 2,500 square feet - apr 10th 2009

    investorshub.advfn.com/boards/read_ms...
    [/quote]

    Crack toch! Wat een non-informatie!

    Dat is 232m2.

    En dat is drie keer het formaat van mijn woonkamer toen ik nog in Rotterdam woonde (5x15).

    Peanuts!!!!!!!!!!!!!!!!!

    P.
    psycho, ben je in rotterdam geboren?
    moet je "om erger te voorkomen" eens lezen;
    schrijver is me nu ontschoten;
    gaat over de havenbaronnen en de nedl. industrie tijdens wo 11.

    gr
  8. ludwig mack 11 april 2009 18:41
    quote:

    crackedtooth schreef:

    minder dan 20 man over
    kan op verhuizing duiden naar goedkopere space of gewoon opslagruimte
    is informatie psycho, heb niet gezegd mind boggling

    wat ik trouwens wel van mdd data verwacht met idd geen yahoo msg board meer over insmed na augustus

    ik begrijp niets van die laatste zin; wat bedoel je daar?
  11. [verwijderd] 11 april 2009 19:24
    Ben Byer, the writer, director and producer of Indestructible, died of ALS on July 3, 2008.

    Diagnosed with ALS, a fatal neurodegenerative disease, filmmaker Ben Byer starts documenting his life on camera. What begins as a series of video diaries grows into an epic journey spanning three years and six countries as he scours the globe looking for answers - and a cure.

    A cinematic adventure filled with extraordinary characters, breathtaking landscapes and abundant humor, Indestructible is beautifully shot by Academy Award™ nominee Roko Belic (Genghis Blues). In his first feature film, Byer takes us on a visually stunning global quest to survive as he begins to understand the power of the human condition.

    Lees ook zijn blog...VANDAAG!...4de zijn wordt IPLEX alweer genoemd...neem ook even de tijd voor FAQ

    Friday, April 10, 2009
    The Waiting Game

    I am tired of waiting. There are all these things happening right now, big things, and it’s frustrating to feel like so many of them are in other people’s control and I am not sure who they are.

    Iplex….I can’t stand thinking about it anymore. All these patients who are waiting to get this drug that might possibly help them. They have to wait for the FDA, wait for the Review Boards, then wait and see if it does anything. All this time, they are waiting to see if they get worse and how quickly.

    Funding….this one drives me absolutely mad. If people had any idea how much time, work and money goes into this operation, they would be stunned. And the fact that we will probably never make any of it back, that’s the tough part. I work my ass off for the simple fact that I know it helps people. Ben did too. How we have managed this long is a mystery and I am not sure how long I can wait for things to get better.

    TV….we finally have distribution and they are doing a great job. But now we have to wait for these various leads to come through. Don’t they know how important this is? Don’t the people sitting in their large corner offices understand how many people are waiting for this? So many people have heard of Lou Gehrig’s Disease, they might even recognize it as “ALS” but they have no idea what it is, what it is about, and that it will probably affect their lives in some way soon. And what about all those who are so alone out there, wondering if anyone knows what their life looks like, waiting to see if anyone cares and does anything. Of course people care, but it’s hard to realise that when you are the person living it.

    Mass hysteria…..I feel like we are about to see an epidemic. Is it true that things have to get really really bad before they can get better? If you look at our economy, that might be an accurate statement. I am not sure I want to see that happen with ALS, but I feel like it is. I feel like this thing has to get so out of control for people to react and do something. As far as I can tell, it is getting out of control and it scares me.

    Hope….It’s just not fair that people have to wait for hope. But from where I sit, it seems like it would be pretty tough to have much if you have ALS. I am continually amazed by the happy people with this disease. All I can assume is that they have hope. Ben did, he always left the door open for it. It was a skill he had. I see the same skill in a lot of ALS patients and they are all inspirational.

    I guess I need to just shut up and wait, continue doing what I am doing and hope that it will all work out ok. Things can always be worse I guess, and I have seen many things change in the past few years. It doesn’t seem like enough, but at least it’s something. If there is one thing I have learned in this life, it’s that I am forever grateful for all that I have and all that I will have tomorrow. Because tomorrow could look very different.

    indestructiblefilm.com/blog/

    Succes, F.
  15. [verwijderd] 13 april 2009 10:21
    Recent Patents on Anti-Cancer Drug Discovery

    The insulin-like growth factor 1 receptor (IGF-1R) and its associated signalling system has provoked considerable interest over recent years as a novel therapeutic target in cancer. A brief outline of the IGF-1R signalling system and the rationale for its use in cancer medicine is given. This is followed by a discussion of the different possible targets within the IGF-1R system, and drugs developed to interact at each target. A systems-based approach is then used to review the in vitro and in vivo data in the published literature of the following compounds targeting IGF-1R components using specific examples: growth hormone releasing hormone antagonists (e.g. JV-1-38), growth hormone receptor antagonists (e.g. pegvisomant), IGF-1R antibodies (e.g. CP-751,871, AVE1642/EM164, IMC-A12, SCH-717454, BIIB022, AMG 479, MK-0646/h7C10), and IGF-1R tyrosine kinase inhibitors (e.g. BMS 536942, BMS-554417, NVPAEW541, NVP-ADW742, AG1024, potent quinolinyl-derived imidazo (1,5-a)pyrazine PQIP, picropodophyllin PPP, Nordihydroguaiaretic acid Insm-18/NDGA). The following tumour types are specifically discussed: lung, breast, colorectal, pancreatic, NETs, sarcoma, prostate, leukaemia, multiple myeloma. Other tumour types are mentioned briefly: squamous cell carcinoma of the head and neck, melanoma, glioblastoma, ovary, gastric and mesothelioma. Results of early stage clinical trials, involving recently patented drugs. are included where appropriate. We then outline the current understanding of toxicity related to IGF-1R targeted therapy, and finally outline areas for further research.

    www.bentham.org/pra/CurrentIssue.htm
1.439 Posts
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