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    • #15591
      Jeff
      Participant

      So Canada approves the use of ibudilast from MedicNova, yet in the US it’s still going thru Clinical trials…so frustrating and disappointing for us in the US. We are so out of touch with the urgency needed for a cure…<span class=”q9uorilb tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me fgm26odu gl3lb2sf hhz5lgdu”>?</span>

      https://www.globenewswire.com/news-release/2019/10/28/1936047/0/en/MediciNova-Receives-Notice-of-Allowance-for-New-Patent-Covering-MN-166-ibudilast-for-the-Treatment-of-Amyotrophic-Lateral-Sclerosis-ALS-in-Canada.html#.XukCmlaHwc0.email

    • #16080
      McKenna Baum
      Participant

      What is the status of this drug trial in the US?

    • #16319
      Jane Kriskey
      Participant

      Every time I check the status of drugs I get the same old same on still in trial yadda yadda, Never do I see that you can use the “Right to Try” act and if you do try the drug companies DO NOT have to give it to you. My Daughter’s doctor told her this law was already on the books, under a different name, but our president brought it front and center, but did not take it far enough to include that the drug companies had to give it to you at a cost that is affordable. So you can ask for it and never get it.

    • #16326
      Giselle Vargas
      Participant

      When will it actually be available in Canada? We would go to Canada in a heartbeat. I can’t find any news articles on this. Does anyone have any more info on this?

    • #16472
      David Crellin
      Participant

      You think it’s bad in the US and Canada? I experience frustration after frustration with the UK system. Platitudes from politicians, but my MP has agreed to an online meeting.
      I gave up presenting evidence to my consultant – he must be used to patients thinking they know better! In my case, I really do believe I know better. Sister and her husband both senior medics; friend of my son director of gene therapy pharma, another friend PhD in neuroscience from Oxford; and old friends from uni days: two medical consultants, and a regional medical director. So my routes to off-label drug therapies are many and various. Watch this space….

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