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You can..... make a difference 6 years 4 months ago #16089

Hazel, Ariel, Tricia, I want to applaud your efforts and your thoughtfulness. It is truly refreshing and encouraging.

I think pressuring the establishment to show some compassion is a good thing. I pray you are successful.

But I am a cynical man, beyond all redemption :cheer:

We have Bangladesh, and Twinvir, which Dr. Freeman has reported as an exact copy of Harvoni. I think the people at Incepta have enough third parties available to help with global distribution. Even if shipments from Bangladesh are blocked, it my be possible that shipments could be made from countries that Incepta can ship to, they distribute medications to many countries. Incepta is a large company that has over 600 products. And I believe they want to help.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
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Last edit: by Greedfighter.

You can..... make a difference 6 years 4 months ago #16091

I agree with you being cynical Greedfighter (what a perfect user name you have :) ).

Your posts about strategies and ways around distribution are incredibly positive and a relief to me.

big cheers to you
reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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You can..... make a difference 6 years 4 months ago #16092

Thanks Tricia!

If you were not married and lived closer to me I would certainly like to take you out for dinner!
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
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You can..... make a difference 6 years 4 months ago #16093

Lol thanks Greedfighter :), if that included a bottle of wine I might half be tempted haha
My wonderful husband loves a wine but for a long time now he has given up all alcohol and is leading an extremely healthy lifestyle. And even though he keeps saying to me to have a drink if I want and it wouldn’t bother him, I don’t because I just think its more supportive for me not to show him what he’s missing lol. Anyway, the day will come that I’ll have a toast with him to his health.

all the very best to you.
reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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You can..... make a difference 6 years 4 months ago #16094

Wow, now I realize what your info states, that you are married to someone with Hep C

Well, he won't have Hep C for long, and If both ever come to NY City, I'd be happy to take you out for a drink to celebrate!
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
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You can..... make a difference 6 years 4 months ago #16095

Thanks greedfighter and same back! :)

If you ever come to Aus, we’ll toast the joy of life without hepc hey

It’s funny how lurking on a forum and reading posts can lead to a feeling like you know, like and respect so many people. There are many here that I’d toast for their efforts and celebrate their life without hepc.
reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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You can..... make a difference 6 years 4 months ago #16096

Just something I want to explain further...

Whether I was directly effected by hepc or not, I genuinely would hope that I would jump on this wagon pushing for safe treatment for people with hep c and fighting big pharmas hold over health outcomes because of business greed. What is happening is just wrong on so many levels.

I also want to explain my frequent reference to “this could be any medication” further by pasting a copy of something I wrote in a message today...
“I totally understand what you've said about the DAAs, please don't think I'll lose focus of them being the most important issue. I guess I just believe that this situation has the potential to be the example/precedent to take on big pharmas hold on health outcomes because of greed for profit. Sadly their hold has been there for sometime and increasing. I'm a registered nurse and recently a friend told me about a patient that mortgaged her house for a cancer med only to pass away 6 months later. It is just f***** that society has allowed and continues to allow business profits to dominate. Also I have honestly found that people listen more if they hear the story about the DAAs and hepc as being something that could effect them with a cancer, heart or any med. I sorta think people can be apathetic, me included, and they tend to focus on what directly effects them, so if they hear about something in a way that they can relate it to themselves they tend to listen and want to get involved more, so that's why I say it could be any medication... "

:)
reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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You can..... make a difference 6 years 4 months ago #16109

We got a story on the high cost of meds on the local paper but no mention of generics. I'll contact the two reporters that wrote the story. They are from CALmatters ( a nonprofit, nonpartisan media venture dedicated to explaining California policies and politics).

www.desertsun.com/story/news/health/2016...costs-soar/82764350/

P.
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Last edit: by Price.

You can..... make a difference 6 years 4 months ago #16112

"Gilead Reports Drop in Hepatitis C Drug Revenue"
www.wsj.com/articles/gilead-reports-drop...g-revenue-1461875448
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You can..... make a difference 6 years 4 months ago #16113

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Price wrote: We got a story on the high cost of meds on the local paper but no mention of generics. I'll contact the two reporters that wrote the story. They are from CALmatters ( a nonprofit, nonpartisan media venture dedicated to explaining California policies and politics).

www.desertsun.com/story/news/health/2016...costs-soar/82764350/

P.

Great work Price! Hit the comments section people, I just did.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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You can..... make a difference 6 years 4 months ago #16115

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Can I just say I find that link that Vororo posted to the Hep C trust guidance page about generics amazing. It shows times are changing as to how generics are viewed.
Trying to find a phone no. I have for an interested journalist to do my bit in the activist stakes...... :+1:
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
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You can..... make a difference 6 years 4 months ago #16125

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Hi Tricia thanks so much for your campaign re WHO and yes a number of meetings are scheduled May is an important date to have a letter in but that agenda I suspect is set so I have planned other ideas too, world Blood Day and World Hep Day are coming up.

I am addressing my personal

letter to the Regional Director his name is:
Dr Shin Young-soo

Under Communicable diseases as James pointed out elsewhere there is zika, ebola etc
no HepC mentioned in the urgent list
However there is this:

www.who.int/mediacentre/factsheets/fs164/en/
WHO runs World Hepatitis Day as most here would know but just a reminder
So we have the forthcoming meeting but let's also lobby for July 28

I am very concerned this illness certainly affected my life and my children compromised greatly to help.

My letters are modelled on a case study format; l write my story and then a fiscal story based on Australia's population and now it's time to make larger projections, and that's what I am currently working on. I discussed this with one of my medical team a fortnight ago. She agrees WHO. All my lobbying has included my own details as a case study but this approach will be different as the world as a whole is not middle class Australia.
My pitch will be not as personal going in therefore.

I note all my replies to date have numbers meaning they are kept on file. I lobbied hard re DAAs here U can see the number on the letter I have included a fragment of. I cannot share entire letters for people to use if they thought them worthy of using because of my case study approach it tells too much personal info for a forum. I'm sure that someone can put together a general letter but I like this personal work I do if that makes sense after all I lost five important years others lost more many die.

I'm reading a lot here and a few links you probably have these too everyone but if interested and wanting to talk to people about hepC these may help.
I won't also post my story in the press last Dec here for privacy reasons. But I did it before the roll out and I guess a lot of people did who like me want to lobby privately so we aren't posting our links here.

There's a bit of govt response to my nagging if you have a close look you will read them turning me back toward Gilead and supplying me with the phone number for same. This particular letter is from Minister Leys assistant. It's proof of reply and that everything is kept, however if anyone thinks they don't read lobbying they do even if it's replied to poorly.
Ariel






Well I didn't mention some other people I have written to. Q and A who I have nagged so much do other Australians think its a good forum you simply log in and fill out a question its all there online.

I write to charity groups too.
Well this is now a matter for the WHO re access for all. Figures wobble around between 130mil and 180 mil diagnosed I read in various articles.






www.wpro.who.int/regional_director/regio...00_complete.pdf?ua=1
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Attachments:
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You can..... make a difference 6 years 4 months ago #16127

Ariel:
The decision to exclude hepatitis from the WHO's Millennium goals was "an epidemiological oversight based on flawed data."

Back in 2000, when governments worldwide adopted the Millennium goals, experts profoundly underestimated the hepatitis disease burden, They only included mortality figures for acute hepatitis and left out those for hepatitis B and C related liver cancer and cirrhosis deaths — which actually account for about 80 % of the viral hepatitis mortality burden.

Maybe you should remind them of that.

P.
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You can..... make a difference 6 years 4 months ago #16133

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I might not have been clear enough
My lobbying was always a fiscal approach and always will be this is the Global language.
I argue DAAs are the affordable cure for an epidemic but the responses turn me back to two bodies: the PBS and Gilead.
I used case study here because it's local and I represent a middle class cohort from which to compare with the Australian population, loss of workers, cost of long term patient maintenance etc.
In writing to the WHO there are many useful links on this forum from which to construct a letter.
I send most of GFs and Tinas and Hazels links to myself via email
These are most appreciated because they have done the research, I just have to read it.
It's a necessity HepC being chartered of global impact and long term impact on countries GDP and burgeon to Health systems. Not all countries have access to testing, quality of testing oh I will write my letter
A
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Last edit: by Ariel.

You can..... make a difference 6 years 4 months ago #16154

Ariel, I can't express enough how impressive I find your work and effort with what you've posted, thank you heaps for all of your info :cheer:

I read on another thread someone saying they would bow and kiss Dr Freeman's feet and I thought yep absolutely, me too. And now I would add you and all on here to the action, HOWEVER I think yours and beaches would be the easiest due to your regularly soaks in ocean! :lol:
_______________________________________


They have Viral Hepatitis on the agenda for the World Health Assembly and the document reflects the concern, urgency, costs, strategy and planning etc etc, it's just not specific and detailed about hcv and DAA costs but perhaps it cant be too specific re:naming companies etc, :unsure: ). Hopefully more will come from it.



Provisional Agenda/documents
apps.who.int/gb/e/e_wha69.html

Document A69/31
• Viral hepatitis, 2016–2021
apps.who.int/gb/ebwha/pdf_files/WHA69/A69_32-en.pdf

reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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