Anyone here taking Tenofovir Alafenami... - British Liver Trust

British Liver Trust

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Anyone here taking Tenofovir Alafenamide (TAF) instead of Tenofovir Disoproxil Fumarate (TDF) for Hepatits B?

anma profile image
anma
10 Replies

Hello all, I was wondering, are there any Hep B sufferers in the UK that have been prescribed the newer formulation of Tenofovir (Tenofovir alafenamide; TAF)? I know it is associated with a significantly lower risk of reduced kidney function. From what I have read in the available medical literature, it has a greater plasma stability and can deliver tenofovir to hepatocytes more efficiently than the old formulation, at only one-tenth of the dose.

I am aware that in Europe and the US the drug has been approved for use in Hep B patients but in the UK, NICE has not appraised its use due to Gilead failing to submit evidence to support its use. Nonetheless, I have found published research on clinical trials conducted under the supervision of King's College Hospital NHS Foundation Trust consultants, supporting the use of TAF for Heb B patients. Similarly, the British National Formulary indicates the use of TAF in chronic Hep B.

I am about to lose one kidney due to an unrelated health problem and I am worried about the impact that Tenofovir Disoproxil Fumarate will have on my remaining kidney.

Any information you may have about this would mean the world to me!

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anma
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10 Replies

Hi

You may like to try contacting hepbpositive.org.uk/ they are a dedicated charity for HepB who may have more generic medication information for you.

For all specific guidance please do discuss with your hepatologist.

Best wishes

Trust1

anma profile image
anma in reply to

Thank you for the suggestion.

Unknowneternal profile image
Unknowneternal in reply to anma

Hai my mother is taking taf for 8 months I heard it is better than previous version with less side effects

anma profile image
anma in reply to Unknowneternal

Thanks for the reply. Is she based in the UK and if so, is she treating her Hep B on the NHS? My current consultant refuses to prescribe TAF and I would like to find a consultant who prescribes it.

Unknowneternal profile image
Unknowneternal in reply to anma

Sorry I didn't mention early she is not in UK lives in asia

anma profile image
anma in reply to Unknowneternal

I see, no worries.

aqsa profile image
aqsa in reply to anma

Hi my husband has been on entecavir 5mg tablets for 10 years and no side effects on the nhs

anma profile image
anma in reply to aqsa

Lovely, thanks a lot!

mantana profile image
mantana

Late reply, but better then never.

I've started my hepatitis B treatment in Japan, where they had a choice of two drugs: Entecavir and Tenofovir alafenamide (TAF, Vemlidy). They did not even offer the older Tenofovir Disoproxil Fumarate (TDF).

I chose TAF after spending several hours reviewing medical literature comparing Entecavir and Tenofovir alafenamide. Entecavir is a much older drug than Tenofovir alafenamide.

Later in my life, I've moved to Germany. I had hell of a time finding hepatologist who would agree to prescribe Vemlidy (TAF).

Even a university clinic would only prescribe TDF (and refuse to prescribe TAF) - which has bad effect on kidneys and bone mineral density, when compared to TAF. Given that it's the drug which is taken for life - this was highly shocking to me.

I've spoken privately to a hepatologist on why in Germany the procedure for chronic hepatitis B patients is:

- take TDF and take it until your kidneys or bones malfunction

- at this point, move to TAF

And he summed it up shortly: money. TDF no longer has patent protection, has generics available and costs the insurance less than 100 EUR monthly. TAF still has patent protection, no generics available, and costs around 300 EUR monthly. For insurance companies, it's apparently better to save 200 EUR monthly, break your kidney and bones, and only after some years switch to a better drug, TAF.

This should change in 2-3 years from now, when patent protection for Vemlidy expires.

anma profile image
anma

Hey, thanks a lot for your reply. Everything you wrote is spot on! My experience is very similar to yours and I too have been told by on of my NHS hepatology consultants that the main reason why they don't prescribe TAF in the UK is money. Disgusting really and a stupid strategy when taking into account the long term implications. They only prescribe it when there's evidence of kidney damage and resistance to Entecavir. There is no proper Hep B patient support networks in the UK, no pressure on the NHS to change their rules. I am on Entecavir for now and like you said, I wait for the day when the patent protection for TAF expires and the drug becomes cheaper. Hope you're staying positive and as healthy as possible! Take care.

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