Sure Paul, will do. I should have my first GP consult sometime tomorrow, I've only let her know about treatment in a brief phone message. Both of us have got a bit of time to get up to speed though...a lot to take in

Hope for the best Sirs

Good idea CJ. Yes I'm not anticipating any problems either, but it would be good to have access to a bit of backup, even if you don't end up needing it. It must very hard having a sick child, I wish you and your son all the best for a successful treatment...I'm sure he will do fine.

Hi all, If there is anyone in New Zealand needing aftercare and monitoring please feel free to PM me for details of a private clinic in Dunedin who are only more than happy to support and care for you during and after treatment with generic medicine x

Hi, so you are looking for treatment management, ie you already have a script? If so, someone on Greg Jefferys' blog spoke highly of the Prince of Wales on October 15:

``Hi Greg,
I have had great results after only 8 days of using the meds.
All my liver functions are now back to normal.
I have not done the viral load yet, next week I'm due for another blood test so might ask the nurse to include that test.
St. Vincent's Hospital (Sydney) have been really horrible so I moved to Prince of Wales under the care of the Head Nurse who is really wonderful. She mentioned she had been in contact with you.....''

klhilde wrote:

James-Freeman-facebook wrote:

• How Hep C has impacted on you and your family
• The mental torment of knowing cure exists but is unavailable
• Your views on the Buyers Club and parallel imports being facilitated by others
• Your views about Big Pharma pricing
• Your suggestions about what Government can do to help (without breaking the budget)

There is no doubt that every politician as well as every relevant agency or bureaucratic body would actually love to help everyone with this disease. There is also no doubt that treating everyone in need at Gilead's prices would put serious pressure on the health care budget.

But there is one thing that can be done NOW .... IMMEDIATELY!

It will cost the government next to nothing, and has to potential to save the taxpayers millions upon millions of dollars. It will require no negotiation with Gilead or other patent holders, and require no new legislation. And it will have the added bonus of putting pressure on Gilead and the others to come to the table with a better offer.

The resistance of doctors to the idea of prescribing generics and the reluctance of clinics to overseeing the treatment should be addressed clearly and unequivocally.

The government and all relevant agencies should draft an Official Policy Statement, publish it, send copies of it to all relevant health care providers and their clinics, and get the word out through the media with all necessary repetition to be sure people get the message.

The Official Policy Statement should make these three points, clearly and unequivocally:

1) All doctors and clinics are free to prescribe generics to their patients and to oversee the treatment with generics with no fear of reprisal, censure or other negative repercussions.

2) All patients are free to source and import up to 90 days of generic medications for their own use with no fear of reprisal, censure, or other negative repercussions.

3) Individuals, doctors, clinics, pharmacies, philanthropic entities, etc. are free to assist patients in the sourcing, importing, testing, compounding and shipment of these generics, provided they are doing so with no financial gain in the purchasing transaction, and can do so with no fear of reprisal, censure or other negative repercussions.

Could not have put it better, klhilde...this is the absolute crux of the matter.

That no Western govt has yet or can afford to subsidise the new antivirals for all those infected, no matter what "recommendations" the PBAC suggest, or how insistent the various arms of the Hep C 'industry' are that we will have across-the-board, unfettered public access to the proprietary medications - it is never going to happen.

So what is the only logical and valid recourse left to Government? Considering this medical miracle of a virus cure with such a success rate, and so few side-effects needs to be available to the largest number, at the earliest opportunity...that to withold this is only adding to the burden of suffering for all affected.

The Govt needs to bite the bullet and take action....,to not be dictated to by the financial managers of pharmaceutical companies, to the detriment of its own citizens - and make the announcements and necessary legislative amendments for the import and use of generics now.

Its going to be politically unpalatable to say the least! But shouldn't the Government be on the side of its constituency?

Particularly when there is unequivocally NO other solution, other than a heavily-triaged system which will not include even a fraction of those infected with the disease, as happens now in comparable countries like the UK and Canada.

If the Govt wishes to uphold their stated goal of universal treatment for all, there is no other way except through the generics.

James-Freeman-facebook wrote:

• How Hep C has impacted on you and your family
• The mental torment of knowing cure exists but is unavailable
• Your views on the Buyers Club and parallel imports being facilitated by others
• Your views about Big Pharma pricing
• Your suggestions about what Government can do to help (without breaking the budget)

Well, I'm not an Australian citizen, but I just spent 24 days there and I've been following this forum from maybe day one or two, as well as Greg's blog from before he headed out on his trip to India. So while I'm not going to address the first four suggested topics for now, I will address the fifth.
_______________________________________________________________

There is no doubt that every politician as well as every relevant agency or bureaucratic body would actually love to help everyone with this disease. There is also no doubt that treating everyone in need at Gilead's prices would put serious pressure on the health care budget.

But there is one thing that can be done NOW .... IMMEDIATELY!

It will cost the government next to nothing, and has the potential to save the taxpayers millions upon millions of dollars. It will require no negotiation with Gilead or other patent holders, and require no new legislation. And it will have the added bonus of putting pressure on Gilead and the others to come to the table with a better offer.

The resistance of doctors to the idea of prescribing generics and the reluctance of clinics to overseeing the treatment should be addressed clearly and unequivocally.

The government and all relevant agencies should draft an Official Policy Statement, publish it, send copies of it to all relevant health care providers and their clinics, and get the word out through the media with all necessary repetition to be sure people get the message.

The Official Policy Statement should make these three points, clearly and unequivocally:

1) All doctors and clinics are free to prescribe generics to their patients and to oversee the treatment with generics with no fear of reprisal, censure or other negative repercussions.

2) All patients are free to source and import up to 90 days of generic medications for their own use with no fear of reprisal, censure, or other negative repercussions.

3) Individuals, doctors, clinics, pharmacies, philanthropic entities, etc. are free to assist patients in the sourcing, importing, testing, compounding and shipment of these generics, provided they are doing so with no financial gain in the purchasing transaction, and may do so with no fear of reprisal, censure or other negative repercussions.

Hi652
Here is Greg Jefferys latest post today
hepatitisctreatment.homestead.com/generic-indian-harvoni.html

Good news from Greg Jefferys :

hepatitisctreatment.homestead.com/generic-indian-harvoni.html

Dr Richard Sallie is a gastroenterologist who has been involved with Hep C since it's discovery and assists patients with generics.

Dr RICHARD SALLIE MBBS MD PhD FRACP FACG
Suite 35, 95 Monash Avenue
Nedlands,
Western Australia
Telephone: 089-389-7101
Facsimile: 089-389-7103

That's good advice about not over-using the extra energy Em. I felt like Superman when I left for a day at work on site yesterday. I completed work that I'd have paced myself over a day-and-a-half or two days in recent months. Eating dinner last night, Superman felt like he'd been kicked down a flight of stairs by General Zod.

Hi Paul,

regarding my blood transfusion and yours in 1988: I had the transfusion in Oct 1990, AFTER they were screening for HEP C. Found out I was HCV positive when I donated blood in 1992. Saw Red Cross and was told that blood was screened and only way people could get HCV was through sharing needles. Told them I don't do drugs, so where else could the virus had come from? I guess they figured I did do drugs and was a bit coy about it. Later in 1995(?) I had a message left on my home phone about the infected blood - no big surprise. They did a 'look back' program and I guess they would have identified others as well and told them.

Interesting journey since then: I found out some friends I worked with had HEP C arising from dalliances with drugs when younger. All good people and maybe better then me. I think the reasoning for the Red Cross walking away was to protect the continuity of the blood supply - I take it this reasoning also included the idea that HCV positive people would be looked after mainstream.

I found the medico's who supported me since then all good. I often wonder what it is like supporting HCV positive people over long periods of time; it must be a hard road to travel.

In February 2015 I wrote a submission to the Australian Government’s Fourth National Hepatitis C Strategy, the Standing Committee on Health inquiry into and reporting on: Part c. The costs associated with treating the short term and long term impacts of Hepatitis C in the community.

Part of the submission is set out below

All my learning tells me that treating health concerns is best done as a primary endeavour; if you can prevent or cure something in its early stages, then why not? We all know that, but don’t mention stuff about needle exchanges or how on earth anyone can pay for Sofosbuvir.

My wife worked as a radiographer and radiotherapist in a poor Latin American country where health concerns are left so late. Everyone is that poor they cannot afford primary care where a recovery may be gained; instead all the expensive radiotherapy cancer treatment is directed towards necrotising wounds the cancers have been allowed to become. Is this a model of Primary care or palliative care? It’s a waste really, and one that we can duplicate here with Hepatitis C if we like.

Hard choice, a quid up front to keep a working bod working and paying taxes, or lets have everyone of a Disability Support Pension instead.

Some added private thoughts:

I have a great respect for people involved in treating Hep C - someone has to shout into the wind and look after us. Support them in giving them a wider range of affordable options to treat us.

I have met a lot of people (some I knew already but I did not know their HCV status until I mentioned mine) who made some dumb choices when younger. Like me, they deserve better.

The person who donated the infected blood I got was doing a ‘good thing’ with the intention to do his bit for society to allow people who needed blood to live. Any other insinuation or interpretation about any moral blame for this illness or justification for treating someone is just plain crap.

The prison system appears to be an incubator for these types of epidemics. Who is going to manage all the sick people who cannot work (I can use my brain to get around the lethargy) and who end up with liver cancer.

What about the families who miss out on a full life while some family member is crook with this illness and not able to fully provide.

Recommendations

Focus on primary care up front whatever the perceived cost; it will be cheaper in the long run both financially and morally.

On the question of Gilead’s ownership of Sofosbuvir, our government needs to lobby harder for the health of Australians. The recommendation here is to do so. Gilead has no moral stance and its ‘dog in a manger’ attitude is not something anyone should respect. I see on the Doctors without Borders web site India is able to look after its people, why can’t we? Why is problem not addressed more forcibly by my government so that Australians are looked after? Individuals cannot address this; their elected representatives need to for them.

Got no reply but it is on their web site. My question now is not "What happens now?", but "what happens in the future?" Has not this medication pricing stuff occurred with HIV? Now it is HCV. What delays can we expect when HEP X, Y and Z are discovered?

Hey Sir, thats great it wont get much worse occassional head ache and just dont overdo the extra energy. Cheers em

Apparently a generic version of Harvoni is available, or will soon be available, in Nepal. The cost per bottle of 28 tablets will be $238.00 US:

Natco Pharma today said it has launched generic Hepcinat LP, which is in the treatment of chronic hepatitis C infection in adults, in Nepal.

NATCO priced its generic medicine, Hepcinat LP, at Rs 25,000 ($238.00 US) for a bottle of 28 tablets in Nepal, the company said in a filing to the BSE.

Hepcinat LP is generic version of Ledipasvir and Sofosbuvir combination and is used in the treatment of chronic hepatitis C (CHC) genotype 1 infection in adults.

Natco had signed a non-exclusive licensing agreement with Gilead Sciences earlier in 2015, to manufacture and sell generic versions of its chronic hepatitis C medicines, including generic version of HARVONI, in India and other 100 developing countries.

Ooops. Sorry. I just discovered that this is the same medication which will shortly be sold in India. However, from what I have read so far, it appears to be available right now in Nepal.

Take a look at this: blogs.wsj.com/pharmalot/2015/03/19/gilea...patitis-c-drug-deal/
Apparently Gilead intends to stringently monitor the distribution of its anti-HCV medications manufactured in countries such as India:

"Gilead requires patients to present national identification and residency papers, which it argues could disqualify migrants and refugees. And the relief group says the generic drug makers must track patients and ensure the copies are dispensed in limited quantities. One stipulation is that patients must return empty bottles to continue treatment (more here). The relief group worries these moves create an “ugly precedent.” etc. This has not been done apparently with Sovaldi, but I wonder if they will attempt it with Harvoni?