TOPIC:

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.

Hey sabrecat, a mechanism to help people who cannot cover the full amount could be really helpful for some...

More specifically, why not modify the order form so that people can add a donation (to be used anonymously at FixHepC discretion) at the same time that they order their own meds.

When I set up my wire transfer, I rounded up the GBP amount to be sure that the amount in AUD would be enough. I would have happily added a bit more if they possibility was presented.

Going further, why not add a the possibility for anyone who cares to make a donation?

Maybe one day the famous John Martin might send in a few million if he ever has any remorse over his ill-gotten fortune?

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

Hi Berinice,

I hope things went well on Friday with the scan. I am having a fibroscan soon and will find out the good/bad then.

I had a HCC and liver resection in 2012, the liver not being too bad (HCC aside). The whole enterprise of predicting who will get cancer seems a bit difficult to me anyway so I just try to keep healthy hoping not to disturb the old liver too much in the meantime. I was a lucky boy having the cancer detected and got good care following; and I may say expensive care as well.

The following time saw the issue of whether elevated AFP levels were due to the ongoing HEP C or another HCC coming on. And the this what gets me: to be safe I was on six monthly CT scans and ultrasounds between. I seem to get anxious before the scans and settled straight after even though I did not know the results until later. Seems to do ping pong with your emotions I found.

From all this, I cannot think that letting populations be a risk of following in my footsteps is saving money; my Medicare card should be changed to a Frequent Flyer card and I should get Christmas cards for various Pathology and Radiology Services that I frequent. Come on Government, I am a tax payer too and don't sit there risking letting money be wasted this way, and maybe factor in some money value of good public health.

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.

Thankyou sabrecat, yep lots of drinking and weeing. Will know the results monday week. If positive, my doc mentioned injecting radiation into specific cells, if it is a particular growth. The other type would be a resection. the last fibroscan i had in june 2014 said the liver elasticity was good. i am glad christmas is still a month away cause everything slows down for weeks. I couldn't bare not having treatment immediately. I do have a sneaky suspicion that I have inherited 'the dooley curse'-cancer. I am dealing with it as all if's. knowing that you are doing well after resectioning is very heartening. kindly

What happened at the meeting in Canberra?

It was a long day's travel. Neither the minister or her Chief of Staff attended. The people we met were nice but new to their jobs. The PBS guy had a total of 4 days under his belt.

In short hurry up and wait. We did get confirmation that this year is out and it won't be any sooner than 6 months. The PBS guy wanted all 5 listed. I suggested how about just one or two and play the players off against each other for price with a "we only need one solution, give us your best price and maybe we will give you our money" - this is what the Kiwis do and they have 8 x better medication pricing than we do.

James
sounds frustrating but typical. At lease you got to give some useful ideas to the PBS person. From my experience the Dept of Health need all the expertise they can get!

From your description it sounds like they were pretty deadpan and unhelpful.

Did they show
- a genuine interest or understanding of the effects of the disease? or
- just focus on the financial impact - from their point of view?

I was going to suggest targeting the minister for social services to raise the productivity implications of not treating, but I see it is that conservative Christian Porter bloke from WA.....

Thanks for trying Dr. They don't care. Its a bonus if the old timers die cause it reduces budget expenditure on welfare and health. Face up to it, its an IV users virus. Who really gives a shite? The Greens support treatment for all but I don't hear their voice pitching for treatment NOW.
The only way forward is to get welfare groups actively involved. Persuade micro finance charities to provide interest free loans so cash strapped people can access generics. Let us own and provide "treatment for all" stance. Admittedly at a small price.This would be a very good starting point. I am convinced that positive momentum will follow. kindly

"Let us own and provide "treatment for all" stance."
I agree Berrinice.I am not super wealthy,but I would not object to a small surcharge on each hep med purchase to help
someone who genuinely cannot afford it,and needs it.If I reach SVR I will certainly be willing to make a gratitude donation to a charity that supports this.
It doesnt matter how you got Hep C,not everyone got it from drug use,there is no heirachy of shame in this.The most costly, dangerous,socially traumatic and PBS money consuming drug in Australia is legal,and the second most treatment costly is also legal.
At least their stance in Canberra from Dr F's account does not appear to be anti generic.In fact if they are not rubbing their hands in glee
at the growing numbers paying for their own treatment they must be really stupid.
Thanks ,Dr F for giving up your time to wallow in the cesspit of beaurocracy.It must have been a frustrating experience.

Hi miko3 nobody has to make a donation to micro finance charities. They are set up specifically to give small interest free loans to low income earners. They also give low interest loans to low income earners. Currently interest free loans are for the purchase of predominately white goods, car repairs etc. A persuasive individual should be able to get them to fund generics. My thinking is -so you will provide a hepper with a new frig, air conditioner, washing machine etc. better still how about $1,500 or so to save their lives etc etc. The hep organisations could have run with the dr and greg, if they weren't so conservative this pathway to treatment could have been a real fireball by now. About the rest, predjudice is rife, the rest are just unfortunate collateral mishaps. The only people interested in a cure is those involved in someway, the is no collective outrage. I tried a petition via facebook in Nov 14 and I was shocked by the response from "lefties" from all sectors of society. Yep a junkies disease- no sympathy at all. kindly

"A persuasive individual should be able to get them to fund generics."

Good luck with that one Berrinice.Will be delighted to hear that someone actually succeeds.

I am hoping the good dr joe tosanco might be interested. he is anti corporation influences. just waiting for him to email me if he is interested. kindly

Adding my thanks here for your tireless efforts Dr James, and 'kicking against the pricks' as the saying goes.

Seems like all the motions are being gone through at official levels, minus any meaningful conviction to effect change or trying to make a real difference. Your suggestion of following the Kiwi model to get some few meds successfully beaten down in price and approved so at least to get the ball rolling....well the fact that this fell on deaf ears when there are so many in urgent need is a bit of a damning indictment on the system as it exists at the moment. Thanks for going in to bat for common sense and the benefit of a socially maligned population. As you point out berrinice, we are all too easily written off in both the public and politicians minds.