This is a heartbreaking situation. My worst fear (which has driven me to create the Musella Foundation) was that there was a treatment in existence that could help a lot, but we were not able to get access to it. Optune has been proven to help. A lot. There is no longer any question that it works and has the best results of any FDA approved treatments in the USA. The problem is the expense. And how much value you place on human life. Here in the USA, the vast majority of insurance companies pay for it. We - The Musella Foundation - have a copayment assistance program that has been helping a lot of patients pay the copays and deductibles to the point where most of the people that we help do not have to pay anything for Optune (as well as Temozolomide, Gleostine or Avastin). Some people who make too much money to qualify for our program - or the Novocure assistance program - will have to pay something, as will people without insurance.
In the UK, they have a strict monetary limit on what a person's life is worth. They do it because they have a limited amount of money and need to use it where the most people would benefit. Sounds great in theory until you happen to have a serious disease and need a treatment that exceeds their limit. The most unfair part is that the the current regulatory system is set up so that any new treatment for a rare disease will exceed the limit. I am trying to change that with the Promising Pathway Act, but unless that or a similar bill passes, patients in the UK is not going to be able to use any new treatment. DCVAX will hopefully get approval within the next year and is probably going to have the same problem. The CAR-t Cell therapies and viral therapies in the pipeline are going to way more expensive. The only hope is to change the underlying costs so these treatments can be developed at a fraction of the current costs and to have more options so they can compete on cost.