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?

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.[/quote]

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.

Unfortunately Sabrecat I do have cirrhosis early f4 around 23 fibroscan. I will know in a couple of weeks the outcome of the ct scan due on friday.
What the…. was for those poncy decision makers.
I am not happy with the PBAC either cause they refused to list treatment recommendation in July 2014 trying to play hardball with Gilead. That got them/us nowhere. In April 2015 they recommended it for listing, and there was no change in circumstances with Gilead – price still high. PBAC achieved nothing from 2014. The real problem is nobody with tight connections to the Liberal Party establishment had the hard to treat virus. Unlike Ron Walker did with stage 4 melanoma. This melanoma was listed without trials done in Australia, it was straight from the USA. Half their luck.

About Big Pharma Pricing
———————————–

Dear Australian Decision-Makers,

Ancient chinese proverb: Know Your Enemy.

Here is recent analysis by Reuters (25 March, 2015):

“CEOs at large U.S. companies collectively realized at least $6 billion more in compensation than initially estimated in annual disclosures in the five years after the financial crisis first hit…

…An example is John Martin, the CEO of drug maker Gilead Sciences Inc, who has become the best compensated executive of a major U.S. company since the crisis, when factoring in stock and options.

He realized $400.6 million in total compensation from 2009 to 2013, according to the Reuters analysis of the nearly 300 CEOs tracked by Equilar. That is poised to top $600 million by this summer, mostly because of additional exercises of stock options…

…Gilead had estimated Martin’s compensation totaled only $75 million over the five years from 2009 to 2013. But Gilead’s shares have climbed nearly 300 percent since the end of 2008 while net income almost quadrupled to $12.1 billion in 2014, fueled by sales of its hepatitis C drug Sovaldi. The company declined to comment for this story.”

(http://www.reuters.com/article/2015/03/25/companies-pay-ceo-idUSL2N0WM1HS20150325#MHKmYx5dbvOTAcar.97)

Here is a link to the Equilar data:

http://people.equilar.com/bio/john-martin-gilead-sciences/salary/6819#.VjnGZpe37z8

Here is an excerpt from FiercePharma (25 March 2015):

“Of course, investors aren’t likely to complain about Martin’s payoff, because they’ve seen big payoffs, too. And with the company’s hepatitis C franchise jet-fueling revenue past $20 billion in 2014, the gains continued. Gilead hasn’t filed its proxy yet this year, so we don’t yet know how his pay package fared in that record-breaking year.”

(http://www.fiercepharma.com/story/600-million-man-gilead-ceos-stock-gains-push-compensation-way-past-estimate/2015-03-25)

Here is a perspective from Al Jazeerai (21 November 2014):

“Gilead’s price gouging has generated international outrage. In response, the company signed an agreement in September with seven Indian pharmaceutical producers, allowing them to sell generic versions of sofosbuvir and ledipasvir in 91 countries. It is hoped that competition among the Indian companies will result in downward pressure on price so that more people can access the medicines.

While many health advocates, patient groups, media outlets and academics have championed the agreement, it may actually do more harm than good. Gilead portrays itself as a leader in medical innovation, but its real advance is in developing a creative business strategy of managing the competition — and gaining a public-relations boost while doing so. Specifically, Gilead’s agreement quietly undermines India’s patent laws and controls the country’s generic producers. This in turn threatens to reduce competition needed to keep medicine prices low and could ultimately shrink the global supply of affordable medicines.”

(http://america.aljazeera.com/opinions/2014/11/pharmaceuticals-gileadhepc.html)

Here is some analysis and recommendations from Medecins Sans Frontiers” (19 March 2015)

“Medecins Sans Frontieres urged the generic companies to reject a highly-controversial programme that could compromise people’s treatment and confidentiality. The programme – which places multiple restrictions and demands on people receiving treatment – is designed solely to protect Gilead’s commercial interests, and is unprecedented as far as MSF is aware…

…We’ve never seen anything like Gilead’s anti-diversion programme before, where a company can potentially violate patient confidentiality and compromise treatment outcomes in order to protect its profits…

…MSF today also released a technical analysis of Gilead’s voluntary licence agreement with Indian manufacturers, which excludes 50 middle-income countries, where 49 million people with hepatitis C live, including Thailand, Brazil, China and Morocco…

…Gilead is putting in place a ‘tiered pricing’ strategy for the middle-income countries excluded from its licence, which will likely result in high prices for these developing countries that could range from $2,000 to $15,000 or more per three-month treatment course. Research from Liverpool University shows that sofosbuvir could be produced for roughly $1 per pill, or $101 per treatment course.

“We’re seeing Gilead trying everything it can to squeeze every last drop of profit out of some middle-income and high-burden countries, and millions of people with hepatitis C will have to pay the price”, said Malpani. “We are urging Gilead to make urgent changes to its company policies and its licensing agreements so that millions of people with hepatitis C are not left behind.””

(http://www.msf.org/article/indian-generic-companies-should-reject-gilead%E2%80%99s-controversial-hepatitis-c-%E2%80%98anti-diversion%E2%80%99)

Modern business advice: Caveat Emptor!

I just noticed that my input here did not follow the form requested, so here goes:

1. How Hep C has impacted on you and your family

Basically I and to a large extent my family, live a lessor life than we could. This will get worse as the disease progresses. A recurrence of HCC because of Hep C hanging over one’s head is not a good look. Finishing work and going on income support payments will be a drag for my family and the tax payer.

2. The mental torment of knowing cure exists but is unavailable

I, like others, have been waiting for years. Now find a cure is about some big company wants to play games. I suspect (and can say “I believe” as I work in mental health) that a lot of HVC positive people will be on some form of anti-depressant therapy.

3. Your views on the Buyers Club and parallel imports being facilitated by others

Does what is needed for me. So leave it alone and don’t touch. No one stuck up for me when I contracted this virus, so don’t interfere now. One thing you could do is subsidise the cheaper imports for those less able to afford them.

4. Your views about Big Pharma pricing

I remember seeing a program on SBS many years ago about multinationals having the same characteristics as sociopaths. Their allegiance is to stockholders and they go ruthlessly about making profits anyway they can and care not for others. The pity is that people who work in them are just like you and I (those running them now maybe not so I expect).

Governments that opt out of funding research opt out of their moral obligations as well and have enhanced companies like Gilead’s ambitions to make profits anyway they can. Big Pharma pricing with this disease is similar to war profiteering to me.

5. Your suggestions about what Government can do to help (without breaking the budget)

Act in the interests of the people you represent. Is not that governments are for, to moderate the capitalist system’s excesses like this? Howard faced down the gun lobby; we don’t see the school shooting stuff that happens in America.

Hi Vroro,

your comment about donations got me thinking about the National Disability Insurance Scheme (NDIS) that has been rolled out in the Hunter region in NSW. Don’t particularly think it is that great and it is showing some cost over runs apparently. BUT, what about our government making one off grants to people seeking these medications.

This could be a way of opting out of arguments with Gilead – someone else in this forum mentioned they offered them $30,000 for drugs that cost them less than $1,000 (?) and they got knocked back becuase Gilead wanted the whole $88,000! If that is their level of sense then dealing with them is like trying to convince a three year old to share (achievable with a three year old though).

Anyway, the way I could see this is:

1. some bod is prescribed the medications legally and based on a doctor’s assessment.
2. they apply through say Medicare for a one off grant of say $2,000 that is funded to them to pay for the medications.
3. the recipient buys the medications from wherever they like – even Gilead.

I can see some problems with this that would need to be managed:

a) making sure the money was used for the medications. Perhaps funding half the amount and the second half dependent on producing a receipt.
b) making sure that fake stuff is not provided
c) making sure that such a grant does not simply increase the price like happened with LPG car conversions – though this did not seem to worry Centrelink at all.
d) having one’s name on a government data base – HEP C is Notifiable anyway from memory, and if Medicare did it then the information would not be anymore then they would guess anyway assuming the medications are usually used for HEP C.

I expect that Medicare can work this out, surely?

your’s

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)

James,
Buyers club excellent and urgently needed – but only a solution in light of the fact that treatment is not available otherwise. Govy urgerntly needs to support a fair , equitable response to HCV in the community.

Also buyers club is not accessible to everyone. Not sure how many people can afford to pay 2000-3000 AUD for treatment. I am lucky i can afford ti – but that shouldn’t exclude other people from treatment if they want/need it.

The community understands that pharma needs to recoup their costs, but it is not fair that they can use their needs for excessive profits to screw the PBS. Banks are the same – but I digress.

HCV has had a huge impact on my productivity for 30 years.

For the last 10-15 years I have only been able to work part time due to ill health related to HCV.. This impact has gradually increased in the last few years. I am now 53 and still young but recently retired at took a package because i have been so ill. NB I have always looked after my health.
. Only in the last 1.5 year have i not been able to exercise at all. This made me unable to function at work. – Otherwise I would still be in the workforce.
Now with access to treatment through the buyers club, i anticipate being able to return to the workforce.eventually.

Govt should make an investment in this type of workforce participation by making treatments more easily available to all who need it.
Lizzie chan.