Is Soliris (eculizumab) covered by the PBS in Australia?
 

Does anyone know the answer to this and if it is how much people are typically required to pay if they need this drug?

TASHMAC,

Does the information on this page help? It seems to be a page for medical practitioners, but it has a "Max price to consumer" column.

There was a young woman from the Gold Coast a year or two back who had PNH and was put on Soliris but the Government refused to fund it once she went into remission states, so she couldn't have prophylactic treatment. This was on the news and the concern was she was going to have to go into complete renal failure before it would be funded again.

Thanks Neil, much appreciated. I think the concern is reflected by Naive's post as it seems that there is possibly a real lack of understanding of the disease as from what I have read the rulings surrounding whether the drug is covered by the PBS seem to suggest that coverage may not be available if a patient does not appear to require the drug; so a patient starts taking the drug it works and then it is no longer covered by the PBS .... as those that understand the disease know the whole point of the drug is to effectively make it such that you don't appear to need the drug but once you stop taking the drug the disease takes hold again. If this is correct it is a real concern.

At least in the United States, there are two steps that a patient can take when drug coverage is denied.

One is to work with your doctor, first to confirm that the drug is needed (and that the need is ongoing when that's the case), and second to have to doctor provide documentation or a letter stating these facts.

Second is to appeal the government or insurance agency's coverage determination, using the doctor's statement as your evidence. If they deny it again, appeal that as well. Patients who keep after it and are careful to follow all the appeal procedures often meet with success.