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    • #22185
      Amanda
      Keymaster

      Are we making progress? Canada just approved Albrioza (AMX0035) with conditions for treatment of ALS. This conditional approval requires the pharmaceutical company to continue to gather and provide evidence that the treatment works.
      In the United States, the FDA found that Albrioza was safe; however, said it was lacking sufficient evidence determining if it was effective either in helping patients live longer or slowing the rate at which they lose functions like muscle control, speaking or breathing without assistance. Then in March, an independent committee of advisors to the F.D.A. voted by a narrow margin that the therapy was not ready for approval. Later the FDA extended the deadline to September 29th, further delaying the possibility of pALS getting the treatment in the United States.
      As a pALS or a caregiver in the U.S. what do you think about the FDA’s decision? Would you consider going to Canada to get Albrioza? Did you advocate for the FDA to approve Albrioza in the U.S. by writing your representatives or signing a petition?

    • #22235
      Robert
      Participant

      I did write to Rep Nigel. Yes I would go the Canada. Once I get locations. It’s sad how the FDA can turn a treatment down for ALS but will give e the thumbs up 👍 for pesticides that we eat every day in our fruits and vegetables. Maybe there’s now enough money Involved to fill their pockets. I mean I don’t enjoy thinking of things like this but it just make you wonder.

      • #22256
        Iancu Alina
        Participant

        Hello! Where exactly we can find Albrioza in Canda? What pharmacy ? It looks like there is nowhere…i need the pharmacy name and a phone numbere.Thankeyou!

        • #22261
          Amanda
          Keymaster

          Iancu,

          You would probably have to have a doctor prescribe the medication.  You likely cannot purchase it across country lines.

          Perhaps there is someone on the forums from Canada who can provide you with more information.

        • #22264
          Martin Seekings
          Participant

          I understand it will take several months for the Canadian federal government to finalize arrangements with the 10 provincial governments for distribution of the medication. As of now, I don’t think there’s anywhere you can get your hands on it outside of a clinical trial. Probably the best source of information would be one of the Canadian ALS clinics.

    • #22241
      Amanda
      Keymaster

      It’s crazy how money drives so much!

      • This reply was modified 1 month, 1 week ago by Amanda.
    • #22263
      Cynthia J Mikesh
      Participant

      We pay out of pocket for sodium phenylbutyrate. My husband was diagnosed in Feb 2022 and we estimate he is about 2-3 years into the disease. He has been on Tudca & Sodium Phenylbutyrate since late February and has has two ALS team appointments. His disease has not progressed at all in 6 months. He is no different now than he was in February. He is still walking/talking/eating and breathing. We do not know if this is just his natural slow progress or the Tudca/PB or any of the multitude of other things I have him on. But I will take no chances. He will stay on the Tudca/PB and if the FDA is so utterly heartless and blind to the enormous outcry of this community to approve this HOPE then yes, I will go to Canada – or the UK or anywhere else on this planet to get it.

      And yes, I have added my plea to the FDA. If they do not approve this they should all be completely ashamed of themselves. I hope they never have to endure the pain, fear and hopelessness of the diagnosis they feel ok to say “lets just wait a while longer” If someone they loved had ALS the words “lets wait a while longer for more results” would never be spoken.

      • #22282
        Amanda
        Keymaster

        Cynthia,
        I can “feel” so much anxiety, frustration and pain when I read your post. I’ve lost several family members to ALS; however, I can’t imagine watching your spouse or life partner suffering with ALS and then not having access to treatments that are in the trial phase. I understand that the government has a process for approving treatments and they are trying to ensure that the treatments are safe and effective; however, it is so frustrating at the same time. Hopefully if we continue to sign petitions, raise awareness and make our concerns heard by our politicians’ we can change the policies for people with ALS and like diseases. Please keep us posted, and please everyone, continue to advocate for our community!
        Amanda

      • #22330
        Esmeralda Trinidad
        Participant

        Hi Cynthia,

        I have a question about the sodium phenylbutyrate,  where I can purchase it and how much is the cost?
        Understanding that any medication for the pALS is almost impossible.

        Thank you for your help

         

    • #22272
      Bill
      Participant

      Lots of people did the two drugs to make their own. I don’t remember hearing major improvements.  Very expensive, can’t imagine real thing will be cheaper.

    • #22274
      Azizullah Khattak
      Participant

      How the patients living outside Canada can get. Is travelling to Canada is the only way to get it. Is there any other way of getting it.

    • #22278
      Martin Seekings
      Participant

      They won’t get it in Canada either. It’s been approved by Health Canada on behalf of the Government of Canada, but it could be months before it’s actually available on prescription. We’re all waiting with bated breath

      • #22294
        Amanda
        Keymaster

        @Martin,
        How long does it typically take for a drug to be approved and then made available in Canada? I didn’t realize that the Canadian process was as long as the USA’s.
        Amanda

        • #22295
          Martin Seekings
          Participant

          @Amanda

          I would guess around six months, although that’s just off the top of my head. I have an ALS clinic appointment in Toronto on July 26, so I hope to find out more then.

    • #22291
      Mary Kate Smith
      Participant

      I would definiitely seek out out.

    • #22296
      Gwen McMartin
      Participant

      It seems that there is no reason to delay approving this drug/compound for pALS when there are few choices out there for effective treatment. Yes, I would definitely seek out Albrioza treatment when I am able. I am currently in the Courage ALS Reldesemtiv trial. We need as many options as we can get!

       

    • #22297
      Stephen O’Neill
      Participant

      Hi there,

      I am in Australia and have been looking in to obtaining Albrioza in Canada.

      I have been in touch directly with Amymlyx Pharmaceuticals and they expect the drug to be available late July in Cananda, Here is Australia we have a scheme where y doctor can import it, but i need to find an outlet to buy it from like some of you have mentioned.

      However, there are some articles that have the drug being priced similarly to Radicava at circa $170K a year, and i’m not sure i can afford that.

      Can i suggest that those interested email Amylyx at [email protected] to ask them about launch dates for the drug in Canada as the more of us that exopress interest the better i think.

      Stephen

    • #22306
      Elizabeth Pacheco
      Participant

      Absolutely. I will try any drug that helps slow progression. I believe the data is strong. Have been following the research with respect to Albrioza and It seems effective. I am presently attempting to get into any EAP program that is offering it. We are in desperate need  of medications that will at minimum relieve our symptoms and slow progression .

    • #22463
      Susan guarcello
      Participant

      Hi, I had a ALS clinic visit this past Tuesday. The Doctor there sent a RX to a compound pharmacy in my area. The pharmacy called me an hour later asked if I wanted the liquid or capsule form for AMX0035. The down side is the cost $550 for the liquid. $650 for the capsules. I live in south west Florida. I hope this helps others where to look.

      • #22467
        Martin Seekings
        Participant

        I’m surprised to hear you were able to get it over the counter in the US if it hasn’t yet been approved by the FDA, although I’m not surprised at the cost.

        In Canada, we’re waiting for provincial approval of funding for qualified patients. (I had to do a lung function test before getting Radicava.) I’ve been told it will only be available with a prescription from a qualified Canadian neurologist.

    • #22464
      Kathy stitz
      Participant

      Hi Susan,

      Is the cost you listed for a one month’s supply or for longer than this? Thanks!

    • #22465
      Susan guarcello
      Participant

      Hi Kathy, its a one month supply. I am looking into grants that can help. I will keep you posted.

    • #22466
      Martin Seekings
      Participant

      I’m just opting out of email follow-ups. I’ll still read the website

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