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How to get Abiraterone?

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User
Posted 22 Mar 2024 at 20:45

I had a private oncologist consultation following NHS diagnosis. The oncologist, who is also on my NHS team, said that Abiraterone in combination with Prostap and radiotherapy would greatly improve the odds of my longer term survival. He could prescribe privately at a cost of £3700 each month, however he was not able to offer this treatment via the NHS.

I have tried various options for funding - Individual Funding Request and Cancer Rugs Fund, both without response so far. In an article in one of the newspapers, a patient said that he was getting Abiraterone for £250 a month… expensive but much more affordable, however I cannot find out how this was achieved.

Does anyone know of any other ways to get Abiraterone?

User
Posted 22 Mar 2024 at 20:45

I had a private oncologist consultation following NHS diagnosis. The oncologist, who is also on my NHS team, said that Abiraterone in combination with Prostap and radiotherapy would greatly improve the odds of my longer term survival. He could prescribe privately at a cost of £3700 each month, however he was not able to offer this treatment via the NHS.

I have tried various options for funding - Individual Funding Request and Cancer Rugs Fund, both without response so far. In an article in one of the newspapers, a patient said that he was getting Abiraterone for £250 a month… expensive but much more affordable, however I cannot find out how this was achieved.

Does anyone know of any other ways to get Abiraterone?

User
Posted 23 Mar 2024 at 05:56
I am trying, as I am sure anyone with a prostate cancer diagnosis, to pursue all the options to improve my chances of longer term survival.

My oncologist said that Abiraterone would be beneficial for someone in my situation. The risk of metastasis in 9 years is about 30-35% with current standard treatment (radiotherapy to prostate and pelvic lymph nodes) along with hormone therapy for three years. The STAMPEDE trial showed that adding Abiraterone for two years could reduce this risk by about 40%, specifically in cases where pelvic lymph nodes are negative.

This treatment option is not approved in the NHS in England although it is already available in Scotland. The suggestion is that approval is being withheld for financial rather than clinical reasons.

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User
Posted 22 Mar 2024 at 23:05

Hi Ian. I get Abiraterone on the NHS , along with Dexamethasone and Degarelix. No idea if different funding is offered in different NHS Trusts. 

Good luck,

Phil

User
Posted 23 Mar 2024 at 00:32
Abiraterone is not available on the NHS for men who are on a curative pathway. It is only licensed for men with metastatic cancer which seems not to apply to you.

Based on your other posts - that you are on Prostap and will be having radical radiotherapy - my question would be why would you want to take an additional hard-hitting drug that is untested and unlicensed for your situation?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Mar 2024 at 00:52

https://questions-statements.parliament.uk/written-questions/detail/2023-11-08/674/

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Mar 2024 at 05:56
I am trying, as I am sure anyone with a prostate cancer diagnosis, to pursue all the options to improve my chances of longer term survival.

My oncologist said that Abiraterone would be beneficial for someone in my situation. The risk of metastasis in 9 years is about 30-35% with current standard treatment (radiotherapy to prostate and pelvic lymph nodes) along with hormone therapy for three years. The STAMPEDE trial showed that adding Abiraterone for two years could reduce this risk by about 40%, specifically in cases where pelvic lymph nodes are negative.

This treatment option is not approved in the NHS in England although it is already available in Scotland. The suggestion is that approval is being withheld for financial rather than clinical reasons.

User
Posted 15 Apr 2024 at 13:05

My husband was previously getting abiraterone from insurance company but recently they have stopped it. I am still in discussion with them If they are approving it again for me. For the time being I have decided to take generic. It’s been 2 months on this generic abiraterone https://www.medixocentre.com/cancer/abirapro-250-mg-tablets & we are getting the almost same results as Zytiga brand. Just I was bit concerned about side effect. My husband developed some side effect but not serious. We have consulted with our oncologist about this. They said It will be balanced after sometime. So we are not doing bad with generic one. We have tested again after taking 2 months of this pills & PSA level was normal. So you can take the generic option from India if you don’t have Medicare options. They have good reputation.

User
Posted 16 Apr 2024 at 08:18

May I ask whereabouts in the Country/world you are Susan

Am I understanding your situation correctly?

You have private medical insurance.

Your consultant recommended a treatment plan of RT with standard HT plus Abiraterone.

The insurance company initially agreed to fund it.

You commenced treatment.

The insurance company back tracked on funding the Abiraterone aspect of the treatment.

You and your consultant decided you would carry on with the recommended regime by you personally importing the drug from India.

if so wow!

On what grounds did the Insurance company back track?

You say you have checked the PSA since commencing the generic Abiraterone, have you also checked Testosterone levels?

Best of luck with the treatment

 

Edited by member 16 Apr 2024 at 08:56  | Reason: Not specified

User
Posted 16 Apr 2024 at 12:20

I am from Virgina, USA. Yes, you got all.  Well, we are still in conversation with my insurance company. The insurer company wants me to try a different way, usually less expensive. This is for common for things like cosmetic surgery or treatments not approved by the FDA etc so the only option was left for us to get generic generic equivalent. We have read some articles about generics so we took a chance. Fortunately, it is not any regret for us till now. We had testosterone test as well. it was good to go with that & PSA was 5.80 now. We are hoping for the same continue result.

Thanks for your well wishing. I wish you the same.

 
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