Prostate cancer drug not available in England

Hi Dip,

It is supposed to be as it went generic and only costs £60 a month instead of 2.5k a month. I believe the NHS England and Wales have ok'd it. It seems to be slow to filter through and you have you push for it. Enzalutamide is the go to drug that's been used for a long time and similar. So you have to wonder if it's a drug company thing and contracts or just that Enzalutamide is a great drug and the usual go to and why change? A very important thing about Abiraterone is that if you are using it and become Hormone resistant you can move over to Enzalutamide as an alternative but not the other way around.

I think the NHS have used it in covid times as an alternative to chemo and it is used as a later drug. But they have found if used as a hard hitting first line drug very early on it prolongs life expectancy. My partner has it and I'm hoping thats true

What did they say about it on the BBC?

Best wishes

L

https://prostatecanceruk.org/about-us/projects-and-policies/access-to-drugs/

Here is a link with a "contact us" link to "access to drugs". Specifically for if there is a drug that you want and it's not being made available to you. 

Good afternoon. Firstly thank you for such a warm welcome to joining this forum.

My partner had a call from his oncologist yesturday to advise his PSA reading is below 2, relief that his monthly hormone jab is working he is due a second ‘water test’ this week to determine wether or not he needs surgery before proceeding to RT next year.

Friends and family are all being supportive which is amazing, however, some reactions are not what one would expect, but hey ho - thats how the cookie crumbles.

His  is now interested in the Abiraterone drug, which we have also read and seen much talk of in this last week.

He requested the oncologist if he would qualify, however, only Wales and Scotland issue product on NHS free of charge.

He asked about self-funding and was told that the criteria has been adapted recently - and although she promised to investigate, felt that he would not qualify, even if self funding.

Has anyone else had this experience? Interested too know please

Thank you all

i've been on it for 4yrs 5months 

working well in my case 

That’s very assuring and am pleased for you Anubis. Seems we live in the wrong area to qualify on NHS and also await response to self-funding 

Hi SherdanD,

I have to say I’m stumped as to why you’ve been told it’s not available. Did you see that link above for prostate cancer uk. If you open that there’s a “contact us” link for anyone that wants a drug that seems unavailable to them. What are your husbands original stats and staging?  Is your husbands cancer still contained in the prostate? As you mentioned removal. Abiraterone is used for “advanced” cancers that have broken out of the prostate and has spread to other parts of the body or if you have become hormone resistant. 
L

He is stage two with scoring of 7, 4 x slow growing and balance 3. Oncologist  advised removal of prostate is not possible as cancer has spread outside  into seminal glands. 

Ok, if it’s in the seminal vesicles it’s locally advanced so he should be able to have Abiraterone . You must ask again. I’m presuming all consultants know it’s just gone generic and it’s only £60 a month??. I really can’t see any reason that he can’t have it. It’s infuriating that you are having to keep asking . Use the contact above for Prostate cancer UK . And also speak to somebody here on Mcmillian for advice. At the top  of this page there is a “more “ tag with a drop down to “ask an expert” this will take you to a specialist nurse where you can ask why? 
best wishes to both if you . 
keep pushing if you want it . 
L x

Hello SheridanD 

As per BW  - link for your question Ask a Nurse  just click on it and ask away!! 

Best wishes - Brian.

Hi

i live in Scotland any my husband has been on Abiraterone for a while now, his PSA was 252 and he has a hot spot on one lymph node in his pelvis. Due to start radiotherapy shortly. He doesn’t have advanced cancer but the Consultant said as his PSA was so high but bone scan clear he wants to hit the PC with everything he can with view to being curable. He did say Abiraterone  was only available in England for advanced cancers and he thinks it’s unfair and should be available UK wide. I have to agree with him. I find it ridiculous than some men cannot access this drug just because of where they live. It’s supposed to be the United Kingdom and life saving drugs should be available to everyone in the whole of the UK or not at all. Makes me feel angry but also sad.

Linda