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@anniepie

Hi Heather @heathert thaks so much -- I do have some other Arikayce questions.

No I'm not able to get Aricayce in Australia -- it hasn't been approved here yet or in many other places either yet. But I've recently been approved to be part of the international Arikayce trial, which is continuing over a longer period of time.

(My lung specialist is a co-author on this international trial's published articles -- Prof Rachel Thomson. They've already published the main efficacy results I think. It seems that this current part of the trial is the broader NTM patient testing phase).

I have to wait for the drug and the inhaler system to arrive here from the USA -- I think it has to be a PARI system

I think you were part of an earlier phase of the trial -- possible the main efficacy testing part.

Question: Did the Arikayce trial people supply you with your PARI e-flow rapid inhaler machine, or did you buy it yourself ? (I'm wondering if the trial people use a slower PARI system than the e-flow rapid). Your rapid system sounds much better to use.

Thanks very much for all your help
Annie x

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Replies to "Hi Heather @heathert thaks so much -- I do have some other Arikayce questions. No I'm..."

@anniepie This is Irene. I am part of the Arikayce clinical trial in the US . I started on June 8, 2020. The Panther Pharmaceutical Company supplies everything. Yes, it is a Pari e flow. You are also provided with a virtual nurse for an intensive lesson/training. There is no cost to you except for buying distilled water for sterilization. The Arikayce support is genuine and will answer any and all questions that may arise. Every month when my Medicare print out arrives, and I see almost $11,000, I am grateful to be in this trial. Good luck to you. @irene5

Hi @anniepie Yes the trail included a pari E flow, a fantistic machine which delivers the med quicker, but I had to give it back at the end and buy my own, for my saline use. I may have to use Arikace again if my drugs do not work this time, wonder if I can be in the trial a second time as New Zealand has not approved it yet also , and it is not cheap! All the best Heather