sovaldi and Harvoni..who gets treatment?

I was so happy to hear that at last Nice has given the go ahead to treat people with sovaldi and Harvoni....for the vast majority of people this is what they have been waiting for..but it is not as clear cut as i thought...it looks as if people that have been treated before and not cleared the hep c that have cirrhosis need a longer duration of 24 wks of treatment..looking at the guide lines i see they are not willing to fund this group of people..where does that leave people like me who are not able to take interferon based treatment and have cirrhosis??....i would like to know if we still will get a chance of at least trying the 12wks of either treatments as it is better than not getting a chance to at least give it a go..what do people think about all of this??....not fair i think if this is the case!

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  • Dear Ballie52,

    Nice has now issued guidance for the use of Sovaldi (Sofosbuvir) and draft guidance for the use of ledipasvir-sofosbuvir (Harvoni), which can be found on their website:

    Sovaldi: nice.org.uk/guidance/TA330

    Draft guidance only, Harvoni: nice.org.uk/news/press-and-...

    Whether you are eligible for treatment with these medications will depend on your genotype and treatment history. For those who are not eligible, it is unlikely you will be offered this course of treatment at either length. This is because evidence has shown it is not effective in all genotypes and may be less effective or harmful to the liver for those with cirrhosis, or who have had treatment before.

    Kind regards

    Sandy Forsyth

    Patient Support and Information Manager

  • Thankyou for the feed back...looking at these guide lines i am geno type 4 that had previous treatment with Interferon ..my virus came back before the 1 2wks and i now have cirrhosis ....i am unable to take Interferon so looks like they are not willing to pay for the recomended 24wks of treatment that can and does cure the virus...so for a lot of people like me looks as if we will not be treated because of costing!

  • hepatitiscnewdrugs.blogspot...

    Read this link...though you are not treatment naive and have cirrohisis you may be able to use new drug from Gilead ..I was told by my liver specialist that if you have F3/4 liver disease they are treating now? Yet you are saying you have been refused?

    So I was told Ihave to wait, though I am treatment naive, F2 with genotype 1b...I would of thought the treatment using Harvoni would be available for me now? maybe I misunderstood, but NHS has been given 180 days by NICE...then I am hoping the treatment (Harvoni) which is a combination pill without interferon (and also no Ribovarin in most cases) will be available for all HCV patients with genotype 1a/b & 4. Nice and NHS meet again March 23rd. I have heard June, July and August as possible months when treatment will be 'roll-out'...NHS is not being transparent enough ...no clear message about treatments offered and when yet?

  • Thanks art..not saying that i have been refused but looking at the guide lines it does look like they might not offer the 24wks required to treat people with cirrhosis...i do have stage 4..guess i will have to wait until my next clinic appointment to get some clear info on what they plan to do for people like me if this information is correct!....the new drugs do clear the virus but it does sometimes need the 24wks of treatment and they are saying by the look of it that it is not cost effective to treat...so what then for people who can not take other interferon based treatments?

  • It seems to me if you have cirrhosis then your liver specialist should see you again at your request so you can discuss this further. In the meantime, I do not know the state of your health living with cirrhosis, but hopefully, you have been given good lifestyle guidelines to help keep your liver from getting even worse...you know, no drinking, no unnecessary medications, low fat/sugar/salt diet...anything that makes the liver work harder ...I am guessing you know all this already...

    I would like to know what your liver specialist tells you...if you have HCV and are the right genotype, cirrhosis or not... if there is a possibility the virus would clear for you by taking Harvoni, then it would seem to me that the treatment should be offered to you asap. I think it is only if you are so weak and poorly that they may not be able to offer the treatment straight away. Hopefully, that is not you.

    And 24 weeks, like you said, seems to be the recommended time for the new treatment, Harvoni if you are not treatment naive and have stage F3/4 liver disease.

    Here is an other link that makes interesting, informative reading...

    blogs.hepmag.com/lucindakpo...

    Harvoni should be offered to anyone with HCV who has genotype the drug was designed to

    cure...

    I think Gilead need to rethink their pricing strategy, since it is taking money away from the NHS, for example, that could buy other drugs to treat other patients with other health issues...why is the price so high compared with other drugs? I would think their costs have been covered already, so it must be for profit? The history of Gilead's approach to developing this drug, while successful, seems to represent the interests of the investors at the expense of the very people for whom the drug was designed to help in the first place. The only appeal any of us with HCV can make is to Gilead's altruistic side...and, that the NHS Trust managers organize the implementation of this treatment to all of us throughout the UK in a way that is straightforward and asap without burying the poor healthcare workers in a mountain of paperwork. ...which just slows up everything. I assume we are waiting because of the expense of the treatment here.

  • i think we know the answer to the treatment working is a yes....i have read all the trials they done on cirrhossis with sovaldi and Harvoni they all suggest that it can and does cure at 24wks in 95% of cases so is about funding....liver transplant cost is also over the £50.000 mark plus life long on going drug treatments to maintain a healthy liver..you would think that treating the condition on the few people that have cirrhosis would be a priority rather than waiting for end stage liver failure ...don't know the ins and out yet but maybe they might take into consideration the cost of not treating and the risk of death having to go through a transplant plus the shortage of livers available when they make a decision to fund or not....everyone is entitled to be treated but i do think people with cirrhosis should be given priority first over cost ..what can you say!

  • in oz they give sofosbuvir to end stage liver on compassionate grounds i am at week 16 of hep c trial and have been undetectable since week 2 fibro 19.2 and expecting that to drop dramatically so there is clear evidence sof can dramatically help cirrhosis i have heard people cured all my bloods have been normal since week 2

  • great news bunny..at last an end for this awful virus for you..i am hoping i will be offered treatment when i see my consultant in April..not too sure yet as to i will get it or not but hopeful

  • fingers crossed baillie,5 weeks to go all good!

  • Great news Bunny...now at last you can put it all behind and move on with your life..i am hoping to get treatment soon..i will have to wait until my clinic appointment to see when and if they will start any treatment....not everyone is sure about who will get treatment with Harvoni and even sovaldi....the guide lines say one thing the doctors say another..i guess i will just wait and see ...a lot of people are worried right now as to who they will and won't fund right now!...any bad sid effects Bunny?

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