Still in remission and Spring is here
4 September 2024The response has been amazing and it has enabled me to pay for all the recent injections of daratumumab at $10,230.00 per injection. Latest tests show I am still in remission. Janssen Pharmaceuticals who market daratumumab in New Zealand started a one-for-one subsidy. You pay for one shot and get the next one free. A condition of the subsidy was that you had to be on a Medsafe approved combination of therapy. My combination was not approved even though good studies from 2021 had proven its benefits and the US FDA had approved the combination in 2021. I wrote to Medsafe asking why the combination was not approved and they replied more or less saying that Janssen had not applied for approval and Medsafe would only then look at the evidence for safety. In other words, Medsafe is reactive and not proactive when it comes to oncology medicines and combinations. A “Catch 22” existed whereby Janssen would not grant the subsidy because my combination was not Medsafe approved but they had not applied for approval. So, my haematologist changed me back to bortezomib (that is funded by Pharmac) which gave me an approved combination and I have just now been accepted for the 1-for-1 subsidy by Janssen..
Pharmac may announce that they are funding daratumumab using some of the new money in the budget but I think it is unlikely because there are many competing cancer drugs under consideration.
I am very grateful and sustained by the contributions and comments you have made.