Need to make some few calls to European clinics and discuss some few questions about the treatment and stay.
EAP Programm - [login to view URL]
Patient meets the criteria. He is 18 years old. Resident of the Republic of Belarus.
There are no treatment alternatives in the country, there is no drug too either.
(The company that develops and sells this drug, recommends calling the clinics and asking for access to a humanitarian program (EAP).
In other studies / trials did not participate before and does not participate now.
24/7 needs artificial ventilation of the lungs.
SMA type 1.
All documents are available.
As far as I understand, the need for participation in the program must be confirmed by the attending doctor. But in the Republic of Belarus they do not know about this program and the concept of "my attending doctor" does not exist at all.
As a result, you need to discuss the following questions:
1. How to go for a survey for a non-resident? What to needed? How much will the survey itself cost?
2. If the disease is confirmed, how to get in Expanded Access Program to Nusinersen? What are the key points in making a positive decision? What problems may arise?
Of course, to negotiate or influence a positive decision is very desirable. But, you need to know at least the cause of renouncement, clearly indicated.
Need to talk with Departament of Neurology.
Email questions are ignored in all clinics. Already tried and more than once.
ATTENTION: The ability to communicate and negotiate is very important. Please take this seriously.