worser and worser...should be a scandal

This topic has 63 replies, 12 voices, and was last updated 8 years, 6 months ago by klhilde.

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9 December 2015 at 11:21 pm #5708
Vororo
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- Guardian Angel
@vororo
Hi dt – you previously mentioned “tipping points”. I do believe we are heading towards one…

Yeah, of course national health services or insurance companies should be paying for our treatments, but thanks to the extortionate price charged by Gilead they obviously have to prioritise who they treat. Imagine the headlines stink if liver cancer or cirrhosis patients went untreated while a good treatment exists and is available (well, don’t even imagine it – it is happening now in Australia!).

I totally agree with all the cost-saving arguments about getting insurance companies to pay for health tourism, but they will never do it.

Apart from embarrassing the heck out of said health services and insurance companies, we just have to keep pressing on with legal alternative solutions.

Of course, fixHepC cannot do anything illegal. So…

* Find a good doctor in Australia or India or wherever who will write a prescription

* Find a friend in Bangladesh or India or Australia who can receive the prescribed meds legally. Get them to post it onwards to you or your friend in need.

* Christmas is approaching! Lots of little parcels should be flying around the world!

* Write to CBS or the BBC or Al Jazeera or any other news agency and tell them the story!

That will be your tipping point!

(ps. from now on, I think I am going to write “thanks to the extortionate price charged by Gilead” in every one of my posts)

Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).
10 December 2015 at 2:48 am #5733
dointime
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@dointime
Vororo,

First I should say that I think all the initiatives that are being taken TODAY to get the meds to the people who need them are great. I am all for something that is working TODAY to prevent deaths and reinfections from hepC.

I also think that taking a longer term overview of the current situation is important, because at the moment we have a slow motion train wreck happening. It is not pretty now and it is going to get a lot more ugly before the crunch comes. I don’t want to ride this train to the end of the line.

That is why I believe we must think outside the box, no matter how intransigent the situation seems. There is nothing more powerful than an idea. An idea is much more infectious than the hepC virus. Things that can change the world start with ideas. So I am not going to say that such-and-such will never happen. I am going to promote a vision of a world in which such-and-such could and might even be likely to happen. The struggle for life-saving meds is not so different from any other civil rights struggle. The great civil rights struggles in world history took many years, and had many moments of hopelessness and despair before the world finally listened. Attitudes changed. Miraculously, we are already seeing this happening for hepC, especially in Australia. This is the time to keep pushing on the weak points and the absurdities of the current system and not to give up. Every person on this site is doing their part as they see fit, to bring about the eradication of hepC from the planet.

dt
10 December 2015 at 2:57 am #5737
Vororo
- Topics: 25
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- Total: 332
- Guardian Angel
@vororo
Totally agree, dt. It will take time, but we must start now on multiple tracks. As James said: nobody left behind!

Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).
5 October 2016 at 6:03 pm #23523
klhilde
- Topics: 30
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- Total: 253
- Guardian Angel
@klhilde
Just jumping back onto this thread with a curious little update.

This is from a post way back on page 2 of this thread:

klhilde wrote:

I had a personal little debate battle with someone a year and a half ago on this very issue and I hope the #@(*@! remembers me and my predictions. I also wonder if he’s not the person at Gilead that got fired. (Mr. “he’s no longer with us” who’s name I’m going to be going back looking for later to see if I can determine if I’m correct.) The person I and others were debating took the handle “pharmaguy” and made the mistake of using the personal pronoun “we” when he got worked up, seemingly outing himself as a Gilead exec. (I still can’t prove that.)

Read the comments in this article from the Wall Street Journal Blogs dated July 11, 2014.
As is my custom, I used my real name in the comments. (click “view all comments”
http://blogs.wsj.com/pharmalot/2014/07/11/gilead-faces-new-pressure-from-u-s-senators-europe-over-hep-c-pricing/

But a few days ago I revisited that blog post … AND ALL THE COMMENTS ARE GONE!

Damn, I knew I should have captured them … Should have used the WAYBACK MACHINE.

Then I wondered … did anybody … maybe?

THEY DID!!!!!!!

https://web.archive.org/web/20150327063500/http://blogs.wsj.com/pharmalot/2014/07/11/gilead-faces-new-pressure-from-u-s-senators-europe-over-hep-c-pricing/tab/comments/
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