Advocate for Choice
UK and USA healthcare systems vary greatly, but here in the UK I think we face massive challenges due to drugs that extend men’s lives simply not being available.
Some men in the UK are lucky enough to have private medical insurance (PMI), but most of the UK population are not in that position. Everybody else has to rely on the care provided by our National Health Service (NHS) which is, in the main, free at point of access, although paid for by tax and National Insurance charges raised on our earnings.
A choice of treatments
I was one of the lucky ones when I was diagnosed in May 2017 in that my oncologist persuaded my PMI provider to fund Abiraterone (Zytiga) as first line treatment, instead of the NHS standard care for castration sensitive PCa. It is Docetaxel chemotherapy together with androgen deprivation therapy (ADT).
As a result, there are men who couldn’t tolerate chemotherapy and are being offered no more than ADT and are thus potentially missing out on additional life that they might have if prescribed Abiraterone. In addition, it means that men like me are denied a choice of treatments, and I believe that this is intolerable and indefensible.
The choice of drugs made available via the NHS in England, Wales, and Northern Ireland is dictated by The National Institute for Health and Care Excellence (NICE). Never has a body been more inappropriately named in my opinion!
To make matters worse, a different body decides on drug availability in Scotland, and Abiraterone has been available as first line treatment in Scotland for over a year.
NICE has steadfastly refused to approve the drug despite several appeals, and we now appear to have reached a stalemate on what is based on the cost of the drug, effectively using men’s lives as political footballs.
In January this year, NICE again refused the appeal. My own oncologist commented when I brought it to his attention, saying, "I wasn’t aware of the decision as yet; somewhat unbelievable."
At the time I was diagnosed, I was a sub elite athlete aged 60 years old. I was scheduled to have chemotherapy but heard about Abiraterone and was grateful to have choices thanks to my PMI cover. Chemo could have had a profound and permanent effect on my ability as an athlete, and Abiraterone was therefore a much better option for me.
I have campaigned as an advocate and ambassador for Prostate Cancer UK for men to have the right to choices of treatment at diagnosis, and I will continue to be vocal on this. Why should men be left to die purely because of the cost of a drug? It is totally inhumane!
Continuing to advocate
I now face a challenging time, as of this writing, as I can no longer afford my PMI renewal and will have to rely on the NHS to supply a drug that isn’t available as first line treatment. I’m praying that my oncologist will find a way, and he has re-assured me that he has a plan.
I’ve been stable on this drug now for nearly 4 years. For me it’s been a wonder drug, for others less so, but there does seem to be evidence coming through of greater efficacy as a first line treatment when PCa is still castration sensitive.
I will continue to advocate for choice for all men.
Do any other members of this community have stories of issues about drug availability?
Do you have ways of managing your mindset for big decisions?