Old 03-12-2018, 05:39 PM #1 (permalink)
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Default Radicava webinar reminder

This Thursday sign up here. https://www.neals.org/for-people-wit...considerations

You can also view it later as NEALS archives their webinar, usually by the end of the day. Worth a browse through the archives if you have not yet done so to see if you want to listen to any old ones

There is generally question time if you listen live
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Old 03-22-2018, 12:50 PM #2 (permalink)
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Default Re: Radicava webinar reminder

I watched this last night and recommend it to anyone wanting a good synopsis on research and experience with Radicava. You can google NEALS ALS, and find their webinars through that.

I didn’t learn too much new stuff, but I did gain a few insights I’d like to share.

1. It’s still such a new therapy that there are no data on its effect on lifespan with ALS, how long it should be given, long term safety, or how it might impact the course of ALS after a year.

2. The study showing a benefit over placebo only had about 60 patients receiving active drug. Patients on Radicava still lost function at 6 months and at one year. They just lost less function (about 33% less) during this time period than those on placebo. Nobody got better.

3. There appears to be a very small window of opportunity for when to start this drug. The study looked at patients with less than 2 years of ALS and FVC of 80% or greater. After 6 months of comparing active drug to placebo, all patients in the study got active drug for an additional 6 months. The patients who were previously on placebo never caught up in terms of lost function to those on active drug all along.

Given how long it takes some people to get started on this drug (insurance approval, logistics, etc.), this could negate some of the benefits people might receive from the drug. The same could probably be said of how long it takes some PALS to get a diagnosis.

4. There was no data to show followup on any of these patients after a year. So we don’t know how they’re doing now.

5. Even though the USFDA has approved the drug for all patients with ALS, the preliminary study did not show a benefit in the group of all patients, and most insurance companies will only approve it for PALS meeting the stricter criteria of the second study (onset under 2 years, FVC of 80% or greater).
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