Thanks for sharing your experience! Any advice on costs? It seems the treatments will cost a hefty sum, and may not be covered by insurance. Not to mention the traveling costs.
Yes, cost is an issue. Unfortunately, we're going to be in the situation where some patients that may be cured by immunotherapy don't get access to it because it hasn't been approved for their specific cancer. Like us, those patients will have to decide for themselves whether they are able and willing to sacrifice time, effort and money for that chance of a cure. We bring attention to this dynamic in our book, through the recounting of our story and the difficult decisions we had to make.
The good news is that immunotherapy is far more accessible today than when we were pursuing it.
As described in the book, there are two major ways patients can access immunotherapy in the U.S:
The first is clinical trials (which are free, although travel expense may need be incurred).
The second is off-label therapy. Off-label therapy is often not covered by insurance. Furthermore, many hospitals charge a few hundred percent markup. But there are ways that patients can obtain off-label immunotherapy at cost price (we touch on these in our book as well). A key point is that immunotherapies should not necessarily be viewed as maintenance therapies (how chemo/targeted inhibitors have traditionally been viewed for incurable patients). Instead, if immunotherapy works, patients may only need a limited number of infusions of PD-1. This assumes that a complete immune response is successfully triggered with a holistic immunotherapy strategy as discussed in the book.
In summary, we believe a cure is possible, but for some, it may come at a cost. But again, the good news is that these treatments are (a) much more accessible today and (b) because of this accessibility, there are many more ways to potentially defray the cost.
Thank you for your post, Richard.
Yes, cost is an issue. Unfortunately, we're going to be in the situation where some patients that may be cured by immunotherapy don't get access to it because it hasn't been approved for their specific cancer. Like us, those patients will have to decide for themselves whether they are able and willing to sacrifice time, effort and money for that chance of a cure. We bring attention to this dynamic in our book, through the recounting of our story and the difficult decisions we had to make.
The good news is that immunotherapy is far more accessible today than when we were pursuing it.
As described in the book, there are two major ways patients can access immunotherapy in the U.S:
The first is clinical trials (which are free, although travel expense may need be incurred).
The second is off-label therapy. Off-label therapy is often not covered by insurance. Furthermore, many hospitals charge a few hundred percent markup. But there are ways that patients can obtain off-label immunotherapy at cost price (we touch on these in our book as well). A key point is that immunotherapies should not necessarily be viewed as maintenance therapies (how chemo/targeted inhibitors have traditionally been viewed for incurable patients). Instead, if immunotherapy works, patients may only need a limited number of infusions of PD-1. This assumes that a complete immune response is successfully triggered with a holistic immunotherapy strategy as discussed in the book.
In summary, we believe a cure is possible, but for some, it may come at a cost. But again, the good news is that these treatments are (a) much more accessible today and (b) because of this accessibility, there are many more ways to potentially defray the cost.