It was both an interesting and frustrating discussion and showcases what a complicated issue this is.
It is difficult to hear your life reduced to economics but a neccessary reality.
My initial frustration with the conversation was the lack of discussion about the effectiveness of these drugs. The 3 and 4 month survival times were glossed over and herceptin praised extensively. I too believe we will look back at yervoy and it will be like herceptin for many with melanoma and I find Fran Boyle's argument about investing tomake future gains compelling. however, I felt that the interview simplified this. For example, I am a patient, on paper that should have benefitted from herceptin. I didn't. It has been preducted by some that the failure rate of herceptin in up to 70% - however, that does not take away from the massive impact it has had on Her2 Positive breast cancer - I simply state it is not so clear cut - the people that benefit long term are few among the larger number of those with this type of disease.
If we have to invest to gain, why should the government be responsible for this - shouldn't the developer of the drugs take on some of this, if not all of this responsibility? I liked the idea of a cancer drugs fund - it sounded like there was promise there. Another question not asked was, why are these drugs so expensive? If we need to get these drugs to people to learn about them, then why aren't there more trials. I cannot access anything now despite my willingness to participate. Instead, I am paying $1000 a week for something that may or may not help - why am I paying, because I feel too good not to, because I would like to have my symptoms reduced, because I still believe there can be the occasional miracle, because I want more time with my children.
I was pleased to here a caller ask about prevention but this was glossed over. The Billions of dollars being put into these drugs is phenomenal with little expenditure, relatively to inform people about lifestyle. Exercise for example can reduce your risk of bc recurrence significantly and costs you nothing! This is not even promoted by most oncologists and it is as effective for some as these expensive drugs are.
So I guess it's just all frustrating. As an advanced cancer patient, yes, I'd like to help those who come after me, but I actually want some help for myself too - the focus of treatment is really not on me, but those who come after me and that is terribly disconcerting.
Eribulen is a drug that was rejected by the PBAC - one of the only drugs tested on heavily pre-treated women to show a signficant survival benefit. Most trials do not accept heavily pre-treated women because the potential to make the stats look bad is there - so time and time again, the trials are for first line metastatic disease. In most cases, the women on these trials progress, that is their disease becomes worse - why is there so little trial availabilty for these women? Because the drug companies need to get their drugs passed through organisations like the FDA and the PBAC and they want to do it quickly to recoup on their investment. The interest is not in the patient but financial gain.
Overall, I usually enjoy listening to Fran Boyle - but I was disappointed in her input in this program. I felt that she simplified advanced BC and overstated the benefits of herceptin - I know she has to know the reality, yes, there are success stories but I'm sure she has seen many patients die this year beause treatment is no longer effective and until they keep accurate statistics about recurrence we will never really know the full story about recurrence and living with advanced disease. I feel sometimes that oncologists feel small gains are acceptable. As a patient I'm saying they are not acceptable. Once again, the bar is set too low.
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