I think it's fair to say that judging by the lack of comments on this thread or any others it remains the elephant in the room.
A few weeks ago a gentleman started a thread asking how he could obtain Abiraterone, a respected and long standing forumite questioned why he would even want it, as it had yet to be approved by NICE for use for men with high risk cancer, frankly given the STAMPEDE trial results and adoption of it's use in much of the developed world, I found the response absurd.
This is Prostate Cancer UK's view of the situation.
https://prostatecanceruk.org/about-us/news-and-views/2023/10/end-the-abiraterone-postcode-lottery-for-men-with-prostate-cancer
In some ways I can understand people's reluctance to comment on a treatment that isn't available to all, but I don't think adopting this position will help change the situation, I believe it is much better to be open and pro-active.
My enquiry with my NHS Radiologist led to an appointment with a consultant at Nova Healthcare and I was quoted £520 per month to supplement my ADT with Abiraterone, this includes the drug itself and the additional testing and consultations that would be required.
I asked if she ever brought up Abiraterone with high risk NHS patients, she told me it was a situation that was often discussed amongst consultants and that she does let patients know of the private option if she believes it would be greatly beneficial.
The following day I'd scheduled a meeting with my local MP. He is a big advocate of men's health, but was unaware of the particulars of the situation re Abiraterone. He said he will write to both NICE and the Health secretary to try help move things along.
A copy of the email I sent to my MP, if anything is incorrect or I've missed anything important out, please let me know, if anyone is minded to contact their MP they're more than welcome to use the relevant parts of it.
I am aware that my T3 and T4 definitions aren't entirely correct, but I was trying to keep things simple and not bring in further terminology and Letters.
Dear Mr Andrew,
Thank you for meeting me last Friday. There was quite a lot of information relayed so I thought it best to briefly document the most relevant with references.
After an MRI scan and a Prostate Biopsy men are given a cancer staging, these are as follows.
T1/T2 early stage cancer confined to the prostate with extremely good chance of cure or long term remission, usually considered low or intermediate risk of progressing.
T3 locally advanced cancer that has spread just beyond the prostate, but not metastasised elsewhere in the body, it has a high risk of progressing if untreated but is still treated with a curable intent.
T4 Advanced cancer that has metastasised to distant parts of the body, historically not considered to be curable but with advances in medicine men with this diagnosis have a variety of treatment options and many will live much longer than previously expected.
It's a bit more complicated than above as initial PSA levels and Gleason score following Biopsy are also taken into account when assessing cancer risk.
Abiraterone was developed in London.
Originally purposed to extend the lives of T4 patients, the case histories documented in the link are of men with T4 advanced cancer and I believe the information in the link is out of date as Abiraterone is now guidlelined for use in most cases of T4 cancer.
STAMPEDE was a large scale multi arm trial which started in 2005 and ended recruitment in 2022, though is still reporting results. It's aim was to investigate new approaches for T3 and T4 cancer.
Standard treatment for locally advanced cancer T3 is Radiotherapy plus first gen HT.
The Stampede trial indicated that adding Abiraterone to this treatment significantly improves overall survival and cancer free survival when measured at six years after treatment.
Summary of results as published in The Lancet
As a result of the trial Abiraterone has been added to SOC for T3 stage patients in much of the developed world.
BBC article
I attempted to contact the gentleman as I was sceptical of £250 per month quoted
NHS Wales adoption:
NHS Scotland adoption:
The patent for Abiraterone ended Oct 2022.
As mentioned in the BBC article there is no incentive for the manufacturers of the drug to apply to NICE for its repurpose to treat T3 patients, though NICE have said they may review the situation independently later this year.
I have a T3 Diagnosis and commenced standard HT with RT scheduled in around 3 months, I have been quoted £520 per month through Nova Healthcare to add Abiraterone plus associated blood tests and consultations to my SOC.
If I can be of any further assistance, please let me know.
Correspondence from yourself with the Minister for Health and NICE to try nudge things along for others who find themselves in a similar position to myself would be much appreciated.
Kindest regards
Edited by member 13 May 2024 at 18:26
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