TOPIC:

I've mention this previously and will repeat it again here. The Loyola study is NOT about:

"Improving Hep C Treatment Via Individualized Therapy"

If it was about that then they would be researching what is the treatment time required to acheive ~100% cure rate for each grouping.

But instead, they are trialling whether they can acheive close to the current sub optimum cure rates wth less treatment in some groups. The correct name for this study should be:

"More Cost Effective Hep C Treatment Via Individualized Therapy For Almost As Good Results"

Now I'll happily concede that this is occurring because Gilead and others charge extortionate rates for these medications but please don't try and convince me that it is being done in the patients best interests because that, in the Australian vernacular, is "bullshit" and we need to keep calling it out when these articles in the media spout it.



[Edit: LG, I agree your points about freeing more cash for other patients and there may even be less sides from shorter treatment though the trial didn't seem very concerned about studying that. But this trial was driven by the ridiculous costs of these medications and it's presentation in terms of being in the patients best interests is just pandering to continued overpricing by Big Pharma.]

Hi Gaj, Yes...I did say

]No doubt they have their eye on shortening"

I was looking at it from a treatment point of view rather than anything else I guess. The fact that treatment times maybe shouldn't be set in stone. The fact they said that poor relapser could have done better with 1 week more treatment for example... maybe more than 1 week, but either way, for good or bad reasons, open to 'moving the goalposts' at least.

hazelriannon wrote: "And as as far as I'm concerned, any doctor who says people with F4 can wait 5 years should be taken out and shot...

... with a US Army JetGun!"

I like it Vovoro but it was: treatment for F4 now, certainly, but everyone else can wait. We beg to differ. I have been F4 17 years but have seen and heard people suffering much more day to day than I did who show far less damage. I am aware that comment has personally distressed quite a few people who feel rubbed out by that analysis. I understand he is doing liver transplant work and sees the very sickest of us but it is disheartening that he doesn't seem aware of how limiting all the years up to that point are.

Thanks for the correction Hazel. But my point, and yours also, is just the same. The idea that people who have a serious illness but who are not yet at the point of requiring surgery should be able to wait is just intolerable when there is a cure available.

It is easy for a specialist to look at the charts of life-expectancy and cost-of-treatment and pronounce a decision.

I can do exactly the same calculation on whether it is cost-effective to spend money on my old car or whether it is better to spend nothing and wait until it claps out completely.

But with Hep-C, the "official" cost of treatment is FALSE and the HUMAN COST OF NON-TREATMENT IS IMMENSE.

WHY DO SO MANY DOCTORS CHOOSE TO IGNORE THIS? ... present company excepted, of course

And I say CHOOSE deliberately, because with HepC, they must all know by now the enormous racket that Gilead are still getting away with...

I blame the media, which over the last 20 years has been bought up by corporate conglomerates. They love their suppression of the truth; it's so profitable for their other investments

In a way it is understandable that public officials don't let people know their options, they have to follow government policy.

China and India allow generics. Incepta pharma will ship these meds to many countries including USA via third party (see Greedfighter's Twinvir to USA journal for details ) Many other companies will too, as noted in Pharma's market section.

I have never seen a mention in the media in USA that a patient can import 3 month supply of generic meds into the USA, by having them shipped through a third party.

The media in USA is a corrupt piece of shit. Where is the journalism? Where is the compassion? The most you get here is a brief mention that you can travel abroad to get the meds, but not a mention of how you might even start to do that.

I'm just disgusted because being 55, I remember a time when reporters would have investigated this and given a how to do it narrative.

Journalists are writing ...in the UK, but Gvt interfering,. The BBC is sadly no longer what it was ....

What happened to my post? Why was it deleted?

Hey GF,
It will return I imagine.
Probably an accidental button pushed.
I deleted the biggest topic on the site by mistake and the magic doc made it come back.
m

What happened to my post? Why was it deleted?

The whole thread was accidentally deleted trying to rearrange it. I thought I'd restored everything but there was one from you I missed.

Is it back now?

Yes it is back now. Thanks Dr. Freeman!

LondonGirl wrote: Journalists are writing ...in the UK, but Gvt interfering,. The BBC is sadly no longer what it was ....

Here is a copy of the mail message that I sent to the BBC on 29/12/2015:

Dear BBC,

This is a message for Fergus Walsh or anyone else in the Health & Medical Team who might be interested to take up this story.

I would like to draw your attention to the amazing story of Dr James Freeman, a rather special GP in Australia, who a few months ago launched "fixHepC" (fixhepc.com) - a "buyers club" for Hepatitis C sufferers that is rapidly becoming the only feasible source of treatment for many UK, european, and American patients.


Why might this make a news-worthy story? Here are some basic facts:

* The hepatitis C virus has been called a "silent killer" because it can take many years for people to learn that they have the virus, and then many more years for serious life-threatening diseases such as cirrhosis or even liver cancer to develop. But even if these conditions do not ultimately develop, the effects of the virus can be devastating, with the principal symptom being fatigue.

* Approximately 659 000 people in the UK have the hepatitis C virus, which is the principal cause of cirrhosis of the liver and liver cancer.

* World-wide, it has been estimated that some 170 000 000 people have the disease. This makes hepatitis C a global health issue.

* While very effective treatments now exist, the list price of "sofosbuvir", manufactured by Gilead Sciences Inc., is a staggering $84 000 for 3 months of treatment. This makes it literally $1 000 per pill. Furthermore, sofosbuvir, should not be taken alone. It has to be used together with another drug such as daclatasvir or ledipasvir, which increases the cost even further.

* In the UK, the cost of the same or similar drugs is breath-taking, costing from around £25 000 to £ 60 000, according to the latest NICE recommendations:

www.nice.org.uk/news/press-and-media/nic...ions-for-hepatitis-c

* This means that at today's prices, it would cost the UK between somewhere between £16 Billion and £39 Billion to treat everyone in the UK who has this disease.

* Consequently, treatments in the UK have to be prioritised, and many people with the disease will have to wait until their condition becomes life-threatening. This means that even though a treatment now exists, many people still have to suffer the often devastating effects of the disease just because of the price. Similar cost-based restrictions in the USA and the rest of europe also apply.

* Because of the extortionate cost of the American drugs, more and more people from the UK, the USA and the rest of europe are travelling to Australia to obtain a treatment.

* The fixHepC buyers club is able to source quite legally for Australians the same treatment from generic suppliers in China at a total cost of between $1000 and $1600 for a full 3-months of treatment. This is nearly 1/100 of the American list price.

* fixHepC is treating some 100 patients per week, and the numbers are rising rapidly.

* The Australian government recently negotiated a deal with Gilead to provide *unlimited* access to all Australians to a hepatitis C treatment, regardless of the severity of their disease. But this will still cost Australia many thousands of dollars per person. Consequently, more and more people are still turning to the fixHepC buyers club for a treatment.


For more background information, I urge you look at the fixHepC "blog"

fixhepc.com/blog.html

I also encourage you to look at some news and TV reports that have appeared recently in Australia:

au.tv.yahoo.com/sunrise/video/watch/3028...ub-initiative/#page1

www.smh.com.au/national/health/fixhepc-t...20151002-gjzud9.html
www.smh.com.au/national/health/hepatitis...20150924-gjts1t.html



I am sorry to report that this mail went unanswered...