Hep C Discussion Forum

Thank you all for your empathy,

Malcom, I´ve read the article you send me, and I have deduced that I could be an SVR rate of 70%, as you say, ( if I´m really F2 or I stay there).

Of course I will require 48 weeks, I´m confused. My goal was to get a better therapy, and I´ve always refuse to dual therapy, thinking I could expect better.

Now, I´m thinking that perhaps I will never have that option.

Anyway, it´s a good new to have CC.

I´ll wait for the nex fibroscan in December, and I will think about it.

 

Oh my God! I want an interferón free drug!!!! or  the unreachable sovaldi!!!

Like you, I suppose .

Thank you all for being there, and thank you very much for the information

 

Hi Rebeca,

Fibroscan is very accurate for F0-1, and F4 (>95%). For all other stages, it would be wise to add a stage just to be sure.

In the old Sprint-2 Trial for Rx-naive Geno 1's, comparison was made between the Victrelis triple and the old SOC, particularly with regard to IL28B genotype.

Rx-naive, CC allele patients had an SVR rate of 78% with Peg/Riba (48 weeks). I can't find another table, but Geno 1a 's do better with SOC than 1b's. Low VL, younger female gender and <F3 patients do best.

Just have a look at Table 2 in this reference:

http://www.medscape.com/viewarticle/771436_3

Hi Rebeca:

It is entirely possible to have hepc for 30 years and to only have progressed to F2.  If left untreated, however, most people who have hepc will develop cirrhosis at about age 65.   www.medscape.com/viewarticle/554637

Unfortunately, we do not know how fast our individual rate of progression is.  There are a multitude of factors that can determine rate of progression. Many are genetic and biochemical factors that we don't know ourselves.  Certainly environmental factors such as alcohol intake can lead to earlier cirrhosis but so can other health conditions, the state of our immune systems, etc. 

Additionally, hepc has been linked to other diseases such as diabetes.  So, hep c can cause suffering and even death in ways other than liver disease.

Fibroscan is the most accurate non-invasive way to measure liver fibrosis but it does tend to be most accurate measuring the upper and lower ends of liver stiffness.  In other words: It is extremely reliable when someone has a great deal or very little fibrosis but not quite as much in the middle ranges.  No tests, including liver biopsy are 100%.

42-52% looks like an overall rate for GT 1a; I don't think that takes individual factors, such as the IL28b, into account.  Perhaps Malcolm will comment more on that.  

Finding reliable stats is a problem due to the nature of statistics and how they are used.  Also, most stats are acquired via relatively small studies that can contain errors or simply be biased.  

I think you are making a wise decision to remain calm and learn as much as you can before jumping into tx.  

Hi Rebeca,

Good to hear from you. I understand your disappointment with the medical system in Spain. It's a world-wide problem and most countries just can't afford the new DAA's . HepC is not a high-profile condition and the stigma attached to the  'IV drug user's disease' remains. Victrelis and Incivek are finally available in Australia, but access is difficult. Spain's economic position is unlikely to change in the near future.

You can afford to wait, and see what the other companies do with the pricing of their drugs. Merck may do the right thing and undercut Gilead and Abbvie.

If you don't want to wait, I agree that Peg/Riba would give you a good chance of SVR. You would need 48 weeks, and the reduction in VL after 4 and 8 weeks would give a good indication of your chances. The chance of SVR would be 70-80% given your IL28B status, age, sex and low VL. At your age, side effects should be manageable. It's a difficult decision.

Isiscat2011 wrote:

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Hi Rebeca:  At early F2 I would wait and see how things go over the next few years.  Having said that, you are one of the genetically gifted people who carry the CC allele.  Having the CC allele, a relatively low viral load, and being tx naive would give you decent SVR odds with the standard Interferon/Riba therapy. Is that something you have considered?

 

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Yes, I agree with Isiscat on this.  Many of us had no other choice of therapy except for peginterfon/ribavirin when we did our treatment and although it can be hard going for some it`s certainly something to consider, in my opinion.  With all treatments the side effects vary from person to person and I remember that when this was the standard therapy for everyone a few years ago many people were able to continue working as usual throughout.  It depends on whether you`re prepared to wait but there`s a lot to be said for getting on with treatment now and getting it done with rather than worrying about it. 

You do have options and it`s worth thinking about! 

Hi Rebeca,

I'm sorry to hear that they're giving you a difficult time but as Jimbob mentioned, your fibrosis stage at F2 gives you some time to wait and in I feel in the near future, you're going to see some positive changes in the EU and access to these new medications. We recently had a discussion here on the compassionate use of Daclatasvir in the EU. While it's still in the trial stages, it's a very effective NS5A inhibitor and will likely see approval soon. The qualification to receive Daclatasvir compassionately is high stage fibrosis. Here's an excerpt and considering the language and that Sweden has asked for special consideration on genotypes, etc, I would investigate any opportunity like this to see if there might be additional "considerations" made, up to and including financial limitations to care. It's always worth a call or letter.

"Compassionate-use programmes are set up at the level of individual Member States. They are intended to give patients with a life-threatening, long-lasting or seriously disabling disease with no available treatment options access to treatments that are still under development and that have not yet received amarketing authorisation. In this specific case, Sweden has requested an opinion from the CHMP on the conditions under which early access throughcompassionate use could be given to daclatasvir, for the use in combination with sofosbuvir, with or without ribavirin, for a specific patient population.

The recommended compassionate use is intended for adult patients at a high risk of their liver being no longer able to function normally (decompensation) or death within 12 months if left untreated, and who have a genotype 1 infection. Further, it is recognised that the potential benefit of such combination therapy may extend to patients infected with other HCV genotypes."

European Medicines Agency advises on compassionate use of daclatasvir

 

I would also, contact every drug manufacturer in Spain that is working on similar efforts and/or clinical trials. You may not see evidence of those trials on the US Clinical Trials database, but you may be able to contact local manufacturers, even pharmacists in Spain and see if they have information that will lead you to information we don't yet have access to here. Just keep fighting and never give up. I will continue to look for information for you as well. Keep your spirits up and remember your fibrosis isn't critical yet, so you do have time to continue the search. But should the fibrosis stage advance to a higher level, there are programs available now that will be ready to assist you. But I would contact them now and keep them aware of your interest. Stay positive!!

Tig

Rebeca I am so sorry to hear that. I can only imagine the disappointment and frustration. Especially after having your hopes inflated.

I don't suppose there is a possibility of you treating in another country, is there? I know nothing of the European Union, or how it functions. Maybe one of the moderators will have an idea.

At least your health is good and you're an F2. I think that will allow you to wait for a better possibility.

Best wishes and good luck Rebeca.

jimbob