As an oncologist I feel the need to comment.
Whilst no doubt there are many failings within the NHS, this isn't necessarily one of them. Thread starter, I make a couple of assumptions throughout this post, simply because there is some information in your particular case that you haven't mentioned. Excuse me if they are wrong.
Firstly, it's important to define what a trial actually is, and what is involved. Essentially a new drug trial is a hugely long process. To give you some idea of the process involved, consider the time scales for the process of getting a new drug certified. It takes on average about 6 years to take a drug from discovery into clinical trials, and then a further average 8 years from the start of clinical trials to being signed off by the relevant medical bodies. That's a total of 14 years. This won't mean a lot to you, but rest assured that clearly the administration of these drugs certainly isn't on a whim.
You then need to consider admission criteria and intended benefit. Even with prostate cancer, there are hundreds of variations in simple but fundamental factors, such as stage and grade of disease, extent of local involvement, co-morbidities, patient age and performance status etc etc. To get on a trial you have to fit within a very very specific target population. This is because they are trialling the intervention for that type of disease and that type only You havn't mentioned the name of the drug or the trial, but even though you know someone else who had the drug on the trial, the characteristics of his disease may be completely different to your fathers. Cancer isn't just cancer. There are thousands and thousands of different varieties and types. Prostate cancer isn't prostate cancer, which isn't prostate cancer, if you will.
Thirdly, you need to consider what a trial actually does. It establishes the effect and safety of a drug. The trial drug isn't administered because the doctors know it works and they want to write a paper on it. They think they might know (clearly they must) but they certainly can't guarantee anything for most drugs. This drug might not have any effect whatsoever on cancer. In fact it may even be dangerous. Just because your acquaintance is in some form of remission means nothing on it's own frankly - often plain old luck is what defines these things. The results across the recruited cohort might give you a result, but you can't proclaim it's success (or equally important lack of damage or failure) because some bloke took it and he got better. I've seen plenty of people who have had no treatment and had some remission, so does that mean that the best treatment for cancer is to do nothing? Of course not.
Ultimately you have to consider the following;
- The people administering the trial don't know for sure if it will work (or prove dangerous)
- If it does work, it only works for the specific tumour type, degree of cell differentation and local/distant involvement.
- The fact that your acquaintance got better means absolutely nothing, unfortunately.
I understand your anger and despair, but please consider that the reason you have been told you would have to pay for the drug is because;
a) It's effect (either beneficial or negative) is not known.
b) It might not even be a trial for your father's disease.
Whilst you consider that they are withholding the drug because of cost, consider that they're withholding it in the knowledge it will do nothing at all, or even that it may cause him damage.
I advise you to seek a second opinion - as you are entitled to do. Please be aware however that you may be at a juncture in which clinician's feel that further treatment is unlikely to offer anything except the trauma of actually having the treatment. If that is the case, do you want to spend all of yours and your families time in terrible stress about getting a treatment which your doctors feel will not do anything? Or would you all rather enjoy what I hope is your many years together.
If you would like to PM me with any questions, please feel free. I specialise in cancer treatment. Please don't PM me with any explicit details of your father's illness, it would be very inappropriate for me to give specific advice.
Please note once more that I know no specifics of your problems, and all information is purely train of thought. There is nothing specific in regards to your fathers care/success of treatment etc.
