As you note the data is currently inadequate to be definitive. With 15 kPA on your fibroscan you are F4 and with that the cirrhosis sub groups are the ones most applicable to you. 24 weeks of treatment will be required.

On first principles we observe with HIV there has been a progression from 1 to 2 to 3 (or more) medications and HAART - Highly Active Anti Retroviral Therapy. Given HIV and Hep C are similar there are probably useful lessons but it is still experimental.

Looking to mechanisms:

• Sofosbuvir is a pan genotypic RNA polymerase inhibitor
• Daclatasvir is a pan genotypic NS5A inhibitor
• Ledipasvir is an NS5A inhibitor
• Simeprevir is an NS3/4A inhibitor
• Ribavirin is a guanosine analog (fake RNA component)

Failure to clear represents the selection of resistance. The way I explain it to patients is like this:

• You have 1000 soldiers and you shoot them all with a machine gun
• 100 were wearing bullet proof vest so you walk along with a sword and chop their heads off
• 10 "idiots" put their vests on wrong, covering their necks so you drop rocks on their heads
• 1 "idiot" put the armour plate meant for the front of the vest on his head....

Each drug has what is known as a log kill. A log kill of 1 kills 9:10, 2 kills 99:100

Log kill reflects the fact that for any one drug there are typically some survivors and the next drug's job it to "take them out". It makes sense that the next drug should use a different mechanism to taking Ledipasvir + Daclatasvir would not make much sense because either one can inhibit NS5A for GT1b.

If all of Sofosbuvir + Daclatasvir + Simeprevir were available it's hard to argue that would not be gold class.

If you want to go totally experimental Ribavirin has been shown to provide impressive results in cirrhotics with Sof + Dac so HAART in Hep C might end up as: Sof+Dac+Sim+Riba.

The fundamental problem with small trials is the margin of error. At n=100 this is +/-10% so the 96.6% you might read should really be 96.6% +/- 10%. In other words the confidence intervals of the various options overlap making it impossible to be definitive.

Your priority is more about starting than choice because fibrosis is progressive but regresses in the face of reduced or zero viral load. The more fibrosis you have the harder it will be to get to cure.

Hi everyone. I am 61 years old and have had HCV type 1 since age 25 when I briefly experimented with injecting drugs. I had Interferon monotherapy in 1999 while living in New Zealand but it was unsuccessful and I suffered with depressed mood, horrible flu like symptoms and developed severe tinnitus which I still have. A nasty treatment but although it was unsuccessful, I seem to have come through it all with less lethargy and my ALT has been mostly just outside the normal range since 2000. My fibroscan result this year averaged 5 so luckily I seem to be holding up reasonably well. I have been watching the development of sofosbuvir since the early days of it's development by Pharmasset and was so excited by it's eventual release to the market by Gilead until the shattering disappointment of how ridiculously expensive it is. I don't think that Australia is going to pay the sort of money that Gilead want and I have decided to bite the bullet and buy my supplies through the assistance of the Buyers Club. I have been watching with interest the development of new treatments and I think that Gilead's days of best treatment monopoly will soon be over. A small Australian bio-pharmaceutical company called Benitec Biopharma has been developing a one shot cure for all strains of HCV and is currently in phase 1/11a of a first in man trial in the USA with no safety issues identified so far and early indications of efficacy hopefully before the end of 2015 or in early 2016. This is a very exciting development and I think that if they are successful big Pharma will have to come to the party in drastically reducing the cost of current treatments before they are superseded by this amazing development which could be a real gamechanger in the way we treat not only HCV but also HBV and other diseases. Unfortunately it will be a few years and further trials before this technology becomes available but it offers hope to all of us suffering from this virus that a better treatment may be in the wings and that current treatments should become more affordable within Australia in the not too distant future.

Hi Sean,

I'm good thanks:)

Yep, everything on my end is at Dr Freeman's just waiting on my payment to reach his bank next week, at some
point soon I'll be starting treatment.

What absolute rubbish by the Consultant these are the very same Dr's treating patients with generics from India
in various Irish hospitals.

Keep us updated.

Hi Ahmad,
I'm planning to start my treatment next week. I will start writing my diary when I commence.

My name is Dafne and I am writing to you on behalf of my father Adolfo who was diagnosed with hepatitis c over 12 years ago. He has been seeing a specialist for many years and has now developed cirrhosis of the liver. He has Hep C genotype 1b.

I have been in contact with a specialist in Chile who made me aware of Greg Jeffreys and have been trying to find a doctor that will help my dad with proper treatment. My father's long time specialist has only ever offered him Interferon and my father in all these years has not wanted in to go the way of interferon due to rate of success for his genotype and also proposed side effects of the drug. However now that he has a cirrhotic liver our concern has become more like desperation. We have been doing extensive investigations with regards to treatment and rates of success and we have found a way to access the combination Sofosbuvir+Ribavirin+Daclatasvir which we know has significantly less side effects and a high success rate for his genotype and the terrible side effects.

We understand it is perfectly legal to import medication to Australia for personal use with a doctor's prescription and if treatment is properly supervised. This is the reason I am writing to you today. We would like to know if you would be able and willing to accept my father as your patient and help us with the required prescription and observation while my father undergoes treatment. We would be more than happy to provide you with his full medical history and of course any information you may require with regards to the origin of the required treatment medication. It is unfortunate that big pharmaceutical companies force people in certain parts of the world to dance this dance but we are also aware of many Australians that have been helped by their doctors in achieving proper treatment and eventual cure from a previous death sentence.

I read the SMH article and quickly made my way through the links to find this site here and GP2U. I have jumped the gun and made an appointment to see you on Tuesday on Skype. We would be forever grateful if this led us closer to proper treatment.

Thanking you,
Dafne.

Hey Nadia,

If you are already on Mesochem Dac, would you share how is your treatment going? My father is about to get on this journey and I would be compounding the Dac for him.

This is a known barrier (see hepatitisctreatment.homestead.com/generic-harvoni.html) See Getting Treated/How to do it and `Doctors' above. A foreign script might do it.

Well well, look what I finally found ..... it's not a great price, but I just booked a flight Bangkok - Melbourne rt for a little under $700US ... and I can reschedule the return with no penalty .... and I get to fly on a Dreamliner!

Greg is now offering 3 months supply of tested and compounded Dac delivered to anywhere in the world for £200 (less in Australia).

You can read about it and contact him here:

hepatitisctreatment.homestead.com/generic-harvoni.html

The info is at the end of the 23 September entry.

Once racjel from mesochem received my bank transfer it took 3 days to arrive china to australia. And 2 more days to go through customs to dr freeman. Gotta love fedex. Em

You can't expect such certainty about timing with this arrangement. I know I would much prefer ordering and taking delivery from anywhere in Australia vs the rest of Asia, especially as for the moment at least, FixHepC have an established, well tested pipeline. So I would go to say, Perth and arrange delivery to there.

Yes, I had thought earlier of going that route rather than taking the trip to Singapore. I was originally planning to get the meds from Dr. Freeman. At the time I was finding flights to Perth at about $320 ... going east gets much more expensive. I figured I'd decide after I got here. In any case, I didn't want to have drugs shipped to me here in Bangkok, to a hotel address ..... just asking for trouble.

Then it started looking like it would take at least a week to ten days to get through the *wire money/import/test/capsulize/deliver* process ... and I've still got it in my head to get a four week blood test before I return home. I suppose I don't really need that.

In any case, I need to know exactly how long it will take before I go hunting airfares.

Hi klhilde,

If you are going down the Bangladesh route I heard that Beximco Pharma are also doing a generic Harvoni. Contact is Badrul. Email is:
This email address is being protected from spambots. You need JavaScript enabled to view it.

But - as you are now in Bangkok anyway (I think), why not just fly down to Tasmania and let the good Dr Freeman sort you out. Seems a helluva lot easier to me than either Beijing or Dhaka.

Good luck,
dointime

Update:

Some back info, in case anybody wants to try the same thing.

I originally purchased tickets to be in Thailand for six weeks. I wanted to be here long enough to get my four week blood work done. (In the US my co-pay for one visit to the specialist plus blood work was almost $500.)

Problem ... A few days before leaving I discovered that Thailand is only granting 30 visas on arrival. Too late for pre-trip visa. Have to show a departure itinerary putting me inside that requirement.

No problem. I'll just book a short side trip.
Problem .... how could I know how my schedule with the doctor/hospital would work out?

Whatever, gotta do something .... I booked seven nights hotel in Bangkok and then a five day trip to Singapore .... leaving me 29 days left in Bangkok. That oughta work. Tiger air offered the flight for only $95. Well, not really .... Tiger air has gotchas .... ended up $133. Non-refundable. But still, that left me ready to land in Bangkok.

Got here, everything went too easy with the hospital. Need to book my hotel before I land in Singapore.
Ummm ..... Wow! Singapore hotels are even more expensive than I suspected!
Anyway, I still haven't booked because now I've got issues with the meds. May have to burn the ticket to Singapore and write a new plan.
_________________________________________________________

So, my doctor here in Bangkok chose to write me a prescription for Sofosbuvir/Ledipasvir .... told me Sofosbuvir/Daclatisvir wasn't recommended for 1a. I wasn't going to debate it with him, but it tells me where he's getting his information.

No problem, a couple days later I was given an email address for a contact to get Incepta's Twinvir for $1500.
Problem .... contact doesn't answer.

No problem, I can fly from Bangkok to Dhaka for $388rt. I'll get it straight from the source. And for only $1200.
Problem .... Visa on arrival costs $160 and there is no assurance they'll grant it when I get there. Really? Really!
Problem .... Incepta's marketing office, claiming to have their drugs in every drugstore in the country, isn't answering their emails.
Problem .... Lazz Pharma, claiming to be the largest, most trusted drug store in Bangladesh, with four branches, all open 24 hours a day, 7 days a week ..... isn't answering their email ... or their online order request form ... and I can't seem to get through on the phone either.

No problem .... Bangkok to Beijing is only $270rt. Back to Mesochem and APIs ....
Problem ... I'll have to go to the consulate/embassy in Bangkok to get a visa.
Problem ... I don't know if Rachel will sell me the meds when I get there.

Oh, and if I'm going the Mesochem route, I'd really rather use the Daclatasvir.
Hmmmm .....
___________________________________________

To be continued .....

Ha ha! Nanna nap. I like that one.

Still got the myalgia and arthralgia that I had for a couple of years before I started this treatment, but they can be side effects of Sof+Dac anyway. So maybe they improve post-treatment.

The big difference is 'up top'. I feel much more clear of mind, and don't get mentally fatigued. Also, I'd been getting increasingly irritable, particularly with my young son who is as as bright as a button and a live wire with it. I'd come to hate myself for being 'short' with him, but just couldn't control it. That seems to have faded now, with a relaxed mentality coming with the clarity of mind.