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Immunotherapy and cost

I was wondering if you could share how your immunotherapy is financed - does the drug company give you a reduced rate or pay it entirely on compassionate grounds?  Did you get it only as part of a trial or is it now approved for 'standard of care'?  I recently learned that two of my mutations may respond well to immunotherapy but I keep reading comments about how expensive it is.  I would like a heads up on the cost to the patient and how Ontarians can get around that because it will be my next step when Avastin and Taxol stop working for me.  Did you go through the hospital financial aid department or did your oncologist fight for you to get it or put you in a trial?  We have a lot of important financial decisions to make in 2023 so any advance information will be good.  My onc tends to say 'We will cross that bridge when we come to it' which isn't very helpful when it comes to planning ahead financially.  My husband is on disability and will be retiring at 65 and lose his company health insurance.  I'm retired and we have a very fixed income.  We are both 63 years old so some benefits (at 65)  haven't kicked in yet.  Also if you were getting insurance through work and then retired - did you have trouble qualifying for private health insurance with your cancer diagnosis? Did you find that most cancer drugs and treatments are covered at age 65?  Lots to learn about and plan for. Thanks for any advice you can give me.  Please don't tell me to wait and see - that's not how I function well in the world - I'm a planner (taking into account that there are always unknown, unpredictable variables). My husband isn't a planner - he's a worrier - so I am always looking to reassure him that we will survive this financially. 


  • Fearless_Moderator
    Really good questions to raise.  Were it not that every province treats the financial aspects of treatment differently it would make a great topic for a speaker session or next symposium. I'll mention it to OCC anyway in case there's a way of covering the differences provincially in a one hour overview.  

    I also say good questions because I'm in the same boat as you or close to it and, like you, a planner.  I hate surprises especially when it comes to my health and my pocket book.  

    I'll be having more detailed conversations with my oncologist about immunotherapy in the next couple of weeks but what I understand right now is that there is no immunotherapy drug approved in Ontario yet.  That said,there are trials underway and I expect new ones upcoming that might be applicable to your situation. When your current regimen stops working is when your oncologist will discuss specific options for you if there are any and in that conversation, if there is a trial to consider, you'll get all of the financial information as well as administration process.  From my previous experience on a trial for two years, funding for the drug is usually provided for  during the course of treatment  The question you need to raise is what happens at the end of the trial if the drug is still working but not yet approved in Ontario.   The trial I was on covered that.  The pharmaceutical company agreed to provide the drug free of charge for an additional two years or until it was approved in Ontario, whichever came first. 
    Also ask about travel relief.  Any trial will require you to report to the cancer centre where it's being run regularly to refill prescriptions, blood draws and scans.  Some trials do offer a small stipend to help offset travel costs.. 

    I know this doesn't fully answer your questions but perhaps helps a little.  Hopefully others in our community will weigh in too.  
  • It does help.  It's a bit shocking - I hope they hurry up with this potentially life saving treatment method.