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Thread: Genervon

  1. #241
    Forum Member john's Avatar
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    I have a friend who has a house in Madeira(a Portuguese country) who has lung cancer diagnosed in January in Madeira. He has decided to have treatment in the UK where he also has a home and has been back to Madeira where they are happy to give him scans and X rays a lot quicker than the NHS. They have also prescribed him with medication which he has been told would not be available to him on the NHS because nice has ruled they are too expensive. If this is applied throughout the EU then the answer to your question would seem to be yes you could get it in Italy and like it or not the UK government would have to pick up the tab. I don't think the home he has in Madeira comes into it because he went in originally because he was coughing blood . He is not resident in Madeira and he pays no taxes in Madeira, only in the UK.

    John

  2. #242
    Forum Member Barry52's Avatar
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    John you have wetted my appetite to investigate further. Like your friend I only pay income tax in the UK but I do pay council tax on my small apartment in Italy and therefore I have residential status there. I will email my Italian friend to enquire what their medical process is.

    Barry
    I’m going to do this even if it kills me!

  3. #243
    Forum Member Dude's Avatar
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    Hi Dude

    Thank you for your question. I can give you some general information about Edaravone.

    Edaravone is approved in Japan for the treatment of ischaemic stroke as well as for ALS.
    See link: http://www.mt-pharma.co.jp/e/release...PC150626_2.pdf

    The mechanism of action is believed to be the following: "Edaravone is believed to suppress ALS progression by exerting its inhibitory effect against the development of oxidative damage to nerve cells".

    Edaravone was approved for the treatment of ALS in Japan partly based on the following study, conducted by Abe et al.
    See link: http://www.ncbi.nlm.nih.gov/pubmed/25286015

    In here it is shown that a subset op patients show less functional loss than patients receiving placebo.

    I hope I have answered your question. If you have more questions, please do not hesitate to contact me.

    Kind regards,

    Frans

    On Mon, Nov 23, 2015 at 9:10
    Hello I am interested in trialling Edaravone . Can you please give me examples of patient success. Regards. Dude




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    Amsterdam ● New York ● San Francisco

  4. #244
    Forum Member john's Avatar
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    Not wanting to be picky Dude but shouldn't the above post be in the "light at the end of the tunnel" thread where you posted the link to the supplier edaravone ? This thread was intended to be about the Genervon drug GM 604.
    Incidentally a link was posted on alstdi to the same supplier and it isn't there anymore or I can't seem to find it. I wondered if their moderator had decided it was a link to an advert and taken it down. Can't think why they should if it has the approval of at least one national government for use when treating mnd patients.

    John

  5. #245
    Forum Member Dude's Avatar
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    Yes, you're being picky John, but I'll let you off . Dude x

  6. #246
    Forum Member Barry52's Avatar
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    Hi all,
    Following my recent post I have been communicating with Genervon. They have asked if my neurologist will prescribe GM604 but they are sceptical because N.I.C.E. would not want a precedent in the UK. The Italian cases were as a result of court actions. See below:

    Several PALS in Italy hired an experienced lawyer with the help of a noted neurologist in Rome and filed a lawsuit against the government winning an ex parte decision within a couple of months. Now, the Italian Health Authority is working with Genervon to import and pay for GM604 per court order. One of the patients posted the news in the newspaper and in social media. That is how we learned of the court victory.
    News article about the victory for ALS patients in Italy:
    The court says yes to anti-ALS
    medication. “This decision is going to
    change my life.”
    Comments
    Moreno Miranda Serrani could be cured with an experimental medicine
    by Federica Andolfi
    Moreno Miranda Serrani
    BECOME A FAN OF MACERATA
    Porto Recanati (Macerata), September 21, 2015 - “The judge’s decision is going to change my life. I will be the first person to use this drug, but I’m not afraid.” Moreno Miranda Serrani, who is 47 years old and a native of Treia living in Porto Recanati, has been suffering from ALS since 2009. He has two children, but lives alone. To help him at home, he has two assistants during the day and one at night. He has problems walking, but he also has great strength of character which allows him to move forward with his head held high. He has a history of entrepreneurial success. He established himself as a restorer and dealer of new and used automobiles in Germany. He pursued his second business in Porto Recanati until last year, when he had to stop because of his illness. His life was changed on September 10th by an order of the Court of Macerata which will allow him to to be treated with an experimental drug from the United States known as GM 604, which promises to slow down or even stop his terrible disease.
    Recent Case Reports 8
    “The decision,” his lawyer Fabio Trapuzzano explains, “was issued two weeks after the hearing. My client’s anxious waiting has been transformed into hope. For him, this represents a real chance of survival and an improvement of his condition.” Moreno Miranda Serrani returned to Italy when he started having the first symptoms of the disease. “I went to Germany when I was 26 years old,” he says. “I was forced to come back because of my health. At first, the doctors diagnosed me incorrectly, thinking it was a stenosis of the medullary canal. Years ago, I had a problem with my vertebra because of a diving accident. They operated on me by inserting a prosthesis in the fifth cervical vertebra. I felt better for a few months, then the fatigue, muscle weakness, lack of balance and the difficulty in walking returned. Four years after the surgery, I was diagnosed with ALS. Since then my therapy has involved the use of the only approved drug, riluzole. But it was just a palliative. A year and a half ago, I stopped walking. Fortunately, my disease progresses slowly.”
    The 47-year old continues to struggle day after day with great tenacity. “I have written to all the scientific journals and to the newspapers which have published stories about the new drug, GM 604, and about another patient’s petition to speed up the approval for the use of the drug,” he also says. “Then I contacted my lawyer who said, let's try it. And it went well. I want to tell anyone who is experiencing this situation to take courage.” Trapuzzano’s first judicial success in this area dates back to 2002 when he obtained the possibility of treatment with another American experimental drug for one of his clients. “At the time, it was a national case,” he remembers. Of the 100 patients treated with this drug, 30% have benefited. Then, IGF1BP3 became unavailable. In 2009, the pharmaceutical company decided to stop selling the product in Italy, which caused an absolute therapeutic void. Especially because, according to the medical literature, the only registered drug for this disease prolongs life for just three months.”
    “In our case,” the lawyer says, ”there was a great awareness on the part of the Court of Macerata, which created a precedent and a hope for all patients in the area. It is more of a humane victory than a judicial victory. It is not only a court decision, it is a real chance of survival for my client.”
    I’m going to do this even if it kills me!

  7. #247
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    Hi
    I was also contacted by Genervon in the summer when I was in contact with them and they asked if our neurologist would prescribe it. I wrote to our neurologist at Addenbrookes, forwarded Genervon's email but he very nicely explained that he could not.
    I asked my GP if he would prescribe it, bless him he got his huge book out until I showed him the email and then he said he could 't because it's not approved by NICE.
    I hope it works for this guy in Italy, I hope we will get regular updates, it might be worth staying in the EU and buying a flat out there.
    Like you all, I would do absolutely anything to fix my hubby. I hate the pharmaceuticals who only work on drugs to treat, there is no money to be made on drugs that cure.
    Any hope is hope though and GM06 is about the best hope there is.

    Sylv

  8. #248
    Forum Member Barry52's Avatar
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    Hi Sylv,

    I own an apartment in Italy and have residential status over there but if they have only treated 3 patients (according to Genervon) I don't think we stand much chance of jumping the queue. Let's hope that GM604 gets approval from the FDA and we can lobby government for fast track in the UK.

    How is Kevin doing?

    Barry x
    I’m going to do this even if it kills me!

  9. #249
    Forum Member Dude's Avatar
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    I seen you slip the old 'I've got an apartment in Italy' trick. lol Dude

  10. #250
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    Quote Originally Posted by Barry52 View Post
    Hi Sylv,

    I own an apartment in Italy and have residential status over there but if they have only treated 3 patients (according to Genervon) I don't think we stand much chance of jumping the queue. Let's hope that GM604 gets approval from the FDA and we can lobby government for fast track in the UK.

    How is Kevin doing?

    Barry x
    Hi Barry,
    It hurts to think some relief could be out there but we're not important or significant in the scheme of things to get it. How incredibly sad.
    He has lost his speech and can no longer walk,he has lost weight so have had dietician in to give me tips to increase his calories without increasing his intake. He just does not feel hungry but he has had awful saliva problems, poor ,man has almost drowned and it's worse when he eats or drinks. He is on one and a half Hyacine patches and I now have a suction machine for him which he is using a lot. We've only just got the machine and seems to be helping him. Hestill refuses to have a PEG. His breathing is very shallow but he is very good at wearing the Nippy.
    He is quite upbeat, he never wants to know anything about the disease, refuses to hear if you try to tell him. He has a very laid back personality and hardly ever worries. I think that works well for him and I am glad he is not fretting or getting anxious.
    Thanks for asking and how are you doing? Hope you are all set for winter.
    Sylv xxx

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