Abiraterone unavailability from NHS England for Non-metastatic

Hi Aboniskin 

my OH is on Prostap every 12 weeks and Abiraterone as we live in Scotland. He started on 1000mg a day but it’s been halved to 500mg as it’s affecting his liver function is.  His PSA remains undetectable even on the lower doze . 
Hopefully you get somewhere soon with it as it’s certainly working 

best wishes 

Liz & OH xx

Thanks for the reply, your experience certainly backs up the science and shows this is a promising treatment path. I know a lot of people on here who are based in England are not necessarily in the high risk, non metastatic situation, but I hope they will still help make a case for those of us that are and contact their MPs.

Hi Aboniskin 

I’ve done a similar thing in the past . Contacting anyone that would listen. Even the health secretary. Nothing back from either HS which is super annoying. We have a new MP that comes from a medical background so I will drop him a line. It’s a difficult one and quite exhausting, I feel it’s wrapped up in politics and pharmaceutical contracts with the NHS . Enzalutamide being the preferred go to. Did you know Abiraterone went generic in October 2023 . This makes it a fraction of the price than it was before. It is a very strong drug and very successful at keeping things at bay. It also has the ability to stop your own cancer cells making their own equivalent of testosterone to feed from. It’s a remarkable drug. With this in mind I find no reason why it’s not offered on the NHS as a first line drug- It’s about choice for men - if it’s out there and generic it should be available . Our consultant is very pro it being available to everyone if you want it. I will say though there is a point of weighing up the side effects with if you need to have that sort of level of HT,  because it can be very debilitating. “Suspected metastatic spread”  probably worth it, but anything under that, I’m not so sure. My husband had it because he had a high PSA that pointed to spread and that his PSA didn’t seem to want to go lower than 9 on Zoladex. Abiraterone gave it a massive push down. Excellent . He’s having a break from it at the moment, because he’s having a lot of side effects and seeing how he does without it. If he needs to go back on it he can hopefully. He says he feels so much better in himself without it though. Similar to Enzalutamide it can really take it out of you.
Anyway … I’ve over shared as usual, but I’m 100% with you. This is a drug that should be made available to all men in if they want it. It’s about choice for men. 
L 

Thanks for the detailed reply, it’s very useful. My PSA was very high which is why I am interested in its potential. I am young and otherwise in very good health so I can probably take it. Yes, please contact you new MP. My MP is relatively new so we’ll see if she is climbing the ladder or still keen to represent her constituents. Are you in England? I was wondering how your husband got his Abiraterone?

Yes we are in England . We had a second opinion at the Royal Marsden and discussed a treatment plan. One that they would recommend. HT - Abiraterone - RT . Then asked her to recommend a consultant nearer to where we lived that she felt was appropriate, we then contacted them and she contacted on our behalf. We weren’t over happy with where we were at that time, small hospital and long NHS wait times. New consultant at Addenbrookes agreed to take OH on and the treatment plan. I feel the door was open to us because of the Second opinion and the recommendation. Maybe? 
At that time I remember feeling extremely stressed and driven to get what we thought was the best possible treatment going, a long time ago now. I think we all feel like that. Very stressful times at the beginning of diagnosis. 
L 

That’s interesting. There is obviously scope in the system. You are doing great work supporting your husband. Addenbrooke’s seem very switched on. They are currently setting up a genetic test for me to check for BRCA genes. I am going to investigate my options further. I just looked at my profile and noticed the info I thought I’d entered was missing. I’ve added it (again) so you can see where I’m at if you take a look.

Hi Aboniskin 

I’ve read your profile and it looks like you are similar stats to BW , but what is evident is how things have changed and progressed in the last couple of years. Ie: Triple therapy is a relatively new concept and not anything that I had heard of two and a half years ago. Each year  pushes the boundary of curable and treatable and we are so lucky to be part of these fast moving times. 
I really like your treatment plan and you are right, you are young and clearly fit, so you can take that full on treatment and get through it easier.  Please keep posting how you are doing, it’s really interesting to read other people’s journey especially if they are of a similar level. I sometimes wonder why I am on this forum, I guess because; there is comfort in knowing that you are with others that understand where you are without having to explain. But also there is a hotbed of information and ideas, treatments, drugs that are new. It’s such a relevant forum and it forms questions and ideas for each person to keep up to date on their own treatment. Empowering I think. 

Yes, your husband and I have similar stats, as does L1m on here, who is also young and has been very helpful providing me with information. It is empowering to hear real life experiences rather than grim statistics that are, frankly, out of date. As you were told in one of your oncology meetings, 10 years ago, you might be looking at 5 years, now it is 10+ and with age and health taken into account, plus whatever is developed in those 10 years, that could double again. There are no guarantees, but I think a hopeful outlook promotes better health and becomes self-fulfilling to an extent.

I’m going to speak to my oncologist about the possibility of adding Abiraterone while I am on Zoladex, given my risk and age and health. I might have to navigate carefully, but I think what you have told me will be useful.

Hi 

I am also in a battle to get this drug for my husband who is non metastatic high risk as we too saw the results of the STAMPEDE trial and the subsequent BBC article in March.

This is a response from Karin Smyth Minister of State for Health:

NHS England has developed a clinical commissioning policy for abiraterone as an ‘off label’ treatment for high-risk non-metastatic hormone-sensitive prostate cancer through its clinical prioritisation process. A policy was considered as part of the 2024/25 Clinical Priorities Advisory Group (CPAG) prioritisation round; however, I understand that NHS England was not able to identify the necessary finances in revenue budgets to support the funding of any treatments under consideration.

We requested a second opinion from Royal Marsden who agreed my husband met the stampede trial criteria and would benefit from the drug and indicated that the cost is around £250 per month for a private prescription for NHS patients. We decided to pay and approached our local hospital oncologist who said said we can have a private prescription but it will cost £3000 per month. so I began an extensive search for a cheaper option as teh drug is now off label and according to Prostate Cancer UK cost to NHS is about £77 . We were offered it for £600 per month from a private provider Nova Healthcare in Leeds but unfortunately they couldn't offer the required monitoring as we live some distance away. I have posted on many forums for information about men who with the same diagnosis are receiving the treatment and the cost. It varies from £100 (Cornwall) to £267 (Surrey Sussex London Kent) but here in Suffolk it remains at £3000 per month. It really is a postcode lottery.

It is utterly disgraceful that men are being denied this life extending treatment and it certainly seems that the drug companies are involved in illegal activity with the NHS to artificially inflate the cost. I will continue to try to find a more cost effective option that is safe and provided by a reputable drug company. 

Best wishes to you all

Jan

Hi Jan,

My letter went to my MP, and I also sent it to a friend who lives on the South Side of the city and asked him to send his version to his MP. The more noise we make the better. I hope some people on here who are perhaps not in the same situation also help out. Sharing information is also vital. There is certainly some profiteering going on which you have identified. Keep me posted on your progress and I will do the same.

Best wishes, Tom