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Does anyone know how to get iplex in the US? If not, how would one get enrolled in Italy? My father's disease is progressing rapidly and I would really like to give iplex a try. The neurologists I have spoken to don't know much about this topic. Thanks.
You and just about everyone else. Only Italian citizens can get it in Italy, and becoming a citizen takes more time than most PALS have. We have been writing to our senators and representative in Congress, hoping to get some help. If you can afford about $20,000 per month it is my understanding that you can get it from the UK, although I am not sure how legal that is, and we cannot afford it so it is out of the question for us. Because the 13 patients getting it through "compassionate use" are being treated for free, the company is understandably reluctant to add more people to the group, and the FDA stonewalls anyone who inquires. Sorry, but those are the facts as I understand them.
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