TOPIC:

Hi - I could do with a bit of advice - I could reinvent the wheel and don't mind doing so but as this will have been overcome by many before me I thought that I'd ask. I seem to have done a handbrake slide off to the side of the road to procuring the treatment. I can't get a prescription here in New Zealand - I could do the MonkMed thing but the appointments are all in the middle of the night which makes it difficult when one is KOed - can anyone give me a heads up. The Gastro hospital depts move with glacial slowness (they've said 4 months for an appointment) and even then there is an uncertain outcome. I have already sent the money and they are just awaiting the paperwork. Any hints?

Cheers Norman

Which geographical area are you in NZ?

www.gp2u.com. That is the site of Dr. Freeman who runs this forum.

there are some doctors... need to know where you are. Also, ring NZ Hepatitis foundation- they should either find you a doctor or organise a script and blood tests- in theory- keen to hear if that works.

Hi Norman, yes please tell us where you are in general terms. Also, to whom have you sent the money? Just trying to work out how far you have progressed in buying generics.

Well that's encouraging that I've had so many responses - I realize that my original post was rather bereft of details so:
I live 20km North of Wellington, I have discussed this with my doc who is a real go getter but not being familiar with the DAA's currently available cannot provide a prescription. She has referred me back to Wellington Hospital Gastro - where I have been monitored since 2009. The original Interferon/Ribavirin treatment was refused me as the chance of clearance success was less that 40% - though I would have refused such a medieval witches potion anyway.

Gastro are so busy that I would have a long wait and because my doc referred me to them again I have to go back to the beginning of the process again (sometimes I think that there is an intellectual desert between the ears of many Government employees!)

FixHepc have received my payment for the Harvoni generic, I have had all the blood tests (doc said while we're at it we'll test for everything - felt like a deflated balloon after seeing gallons of red stuff evacuate the old bod) including a viral load. I have the consent form, customs letter all teed up and just need the scrip.

FixHepc gave me a list of NZ doctors that had written prescriptions - I phoned them and they were all mystified and denied having done so - but the Palmerston North one - cagey to begin with - slowly revealed a greater knowledge of the process as the conversation progressed.

I did find one name that was promising and that was given me by The Hepatitis foundation - Geoffrey Wong Lower Hutt Hospital Gastro (04 5666999 ex 8553) but once again there is the impenetrable bureaucratic wall to penetrate.

As others have obviously successfully navigated the regulatory obstacles that people in power that have nothing better to do put in the way I was hoping to learn from others experience.

Oh and there is a good article on it in the TalkinghepC mag :

issuu.com/hepatitisfoundationofnewzealand/docs/final - page 8

Any suggestions?

Cheers Norman

Hi Norman,

I wonder if the problem with the doctors you approached is that they are reluctant to discuss this area with a blind caller over the phone. You may find them more willing to discuss during a face to face meeting where they have a copy of your medical records to refer to.

Depending on the current status of your illness, and assuming you don't have cirrhosis or other complications then once you have a prescription your own GP would likely be able to monitor your treatment progress based on the linked cheat sheet.

fixhepc.com/forum/forum-gp-cheat-sheet.html

Anyway, both Hazelriannon & Chapel are located in New Zealand as is Tina from page 11 who is also an active member here. They don't appear to be online at the moment but will no doubt be along soon to provide further advice as to doctors in your country now that they know where you are located.

Hi Norman, I am technically under the care of Dr Jeffrey Wong at Hutt Hospital and of course I used generics.
His nurse told me his patients need to live in his area to be under his care so this might be a barrier, but he is aware of generics and knows about FixHepC. They were handling about 6 generic patients last time I met the nurse.
Maybe arrange a meeting with him and see what he says? He's a very friendly chap.

Oh your GP will need to refer you to Dr Wong, that's the way to see specialists here apparently. The fact that you do not live in his area (the Hutt) might be problematic, I'm not sure.
If you find you cannot get a NZ script, perhaps consider flying to Australia. An Australian script is fine with carried medicine, not so with an import, unless the FixHepC trial status makes it possible. For the price of the airfare you would avoid a lot of worry/possible seizure of the meds. That is what I did, and I was then able to approach doctors for monitoring. The first specialist I approached, a colleague of Jeff Wong, agreed.

Hey Norman

Welcome may I suggest to contact Dr Wong should you choose not to fly to Australia., I can assure you that he has and is treating patients choosing to take the ball into their own hands. I think you will find him and his nurse really helpful in giving you care during treatment.
As a side note I flew to Australia to collect my meds - it was a nice process and an easy thing to do. If thats what you want to do then my advise would be to get a prescription from either here in New Zealand OR in Australia.

I think if you want to avoid the drama that you have to go through then you should speak directly to his nurse, I am 99% sure I can get you her number by tomorrow.

and just wanted you all to know that the New Zealand Hepatitis Foundation has shared Jame's et.al presentation on generic medication.

Hi Gaj - Ah thanks for the tip - generally I've found all the front line staff brilliant (just the bureaucratic nonsense being frustrating) those that I have spoken to have made sensible suggestions that I have pursued but once again the difficulty is some one committing and saying something like "well I can understand the position that you're in and I would like to help but I will have to have a referral from your doc that includes full bloods, fibroscan and viral load then we could take this further" - nope just doesn't happen - what you get is "not my department sorry can't do anything for you" and driving around the countryside for days on end will probably produce the same result as face planting the concrete pavement - a stinking great headache!

Hi Chapel - great to hear that Jeff Wong is forward and accommodating- I'm under Wellington not the Hutt and Rees Cameron is probably a little too much infatuated with his own knowledge - but the advice the other specialists gave me was to bend the ear of Wellington Gastro and go from there. I tried yesterday and was given the 4 - 6 months specialist appointment. Flying to Aus would be one of the last options as I need to get passport, visas, airfare and accommodation money (dosh being in short supply due to a bit of outlay that I made to Hobart recently).

Well I'll just have to wait and see if anyone else has some ideas to follow. It must work if people have successfully brought the drug!

Cheers Norman

Tina - thank you very much for your reply - a bit tired now and am slowing down a bit - so I'll check things again in the morning. And persist in the quest tomorrow - uh oh sounds like I'm off to somewhere in middle earth with gandalf. Better go.

Cheers Norman

Just to add my own two-cents,

I have the feeling (from my own experience anyway), that many Drs are unwilling to actively support the use of overseas generics, but once they know that you are taking them, they will support you as far as monitoring is concerned. This is their duty of care, after all. And they will be (or should be) very reassured to know that your generic treatment is sourced from a reputable source such as FixHepC or MonkMed.

And once they see from the first blood tests that the stuff really works as advertised, they will open up and start telling you how wonderful the new generics are.

Again from my own experience, my specialist was at first absolutely astonished that I had flown to Australia to get the treatment. But when I showed him a copy of the prescription from Dr Freeman he was quite satisfied that all was well.

Twelve weeks later, and UND, he told me that I had done absolutely the right thing, and he even seemed apologetic that he had to follow national guidelines and was thereforepowerless to prescribe himself... Still, he told me that if he ever has another patient like me he will keep FixHepC in mind.

So at least as far as Hep-C and generics are concerned, my advice to anyone who might be reading this is not to wait for permission from your own Dr, but just take the initiative yourself and go for it through the Buyers Club!

Hi mate I have just got back on to this site and read your story,and was wondering if your had any luck.
i was under jeff Wong as well here in the hutt .

Hi chongandco,

I've sent you a PM.