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    • #17322
      Bob Scannell
      Participant

      Where is best place to find out information on these, and more specifically, given a need to prioritize where to spend time finding help for my wife’s ALS, are either of these worth pursuing, or just a bunch of words which in the end are not available for most?

    • #17323
      Amanda
      Keymaster

      The right to try law allows companies to provide medication to people who are terminally ill (and doesn’t require all of they approvals) but it does not require companies to make them assessable. It also doesn’t necessarily make them affordable. Each pharmaceutical company would have their own policies. I would star by becoming informed about the law so you know what questions to ask.

    • #17363

      I too am interested but don’t know where to start either. It seems like there are these laws intended to help but unless you are connected with the process and where to find the treatments, its just a hopes up but nowhere to go ending… very disappointing to say the least.

    • #17401
      Jane Kriskey
      Participant

      I agree with you, there is no place to get info on this. None of the ALS sites are any help including this site. I would think this site would have info for us. We are left floundering with no help. I find this very sad to say the least.

      • #17406
        Amanda
        Keymaster

        Jane,

        I’m sorry that you are not happy with our Forums. ALS News Today is an informational source, and we don’t directly get involved with advocacy.  In the forum, information is intended to be shared between community members. We do our best as moderators to research and provide information. If you have concerns regarding the forum please feel free to email myself and Dagmar directly. We will be happy to help if we can.

    • #17416
      Kathy stitz
      Participant

      One of the forums is called ALS Awareness and Advocacy so maybe that would be a place to discuss topics like this.

    • #17421
      Dagmar
      Keymaster

      Good news to share! A webinar on EAP (Expanded Access Programs) – – Friday, Jan. 15th.

      Expanded Access to Investigational Drugs

      Speakers: Dr. Jinsy Andrews (Columbia University Medical Center), Dr. Richard Bedlack (Duke ALS Clinic), Dr. Merit Cudkowicz (Sean M. Healey & AMG Center for ALS at Mass General Hospital), and Dr. Sabrina Paganoni (Sean M. Healey & AMG Center for ALS at Mass General Hospital)

      Join us for a webinar on Expanded Access Programs (EAPs). In EAPs people with ALS who are not eligible for clinical trials are provided the study medication on a compassionate use basis. Our panelists will discuss the benefits and challenges surrounding EAPs and outline a path forward.

      website: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/expanded-access-to-investigational-drugs

      Register to attend: https://register.gotowebinar.com/register/8685606808798659596

       

      • #17430
        Amanda
        Keymaster

        That’s awesome Dagmar!! Thank you for sharing.

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