Trish - FixHepC - Page 2 of 14

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15 May 2016 at 4:47 am in reply to: You can….. make a difference #17227
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
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

.
15 May 2016 at 3:35 am in reply to: You can….. make a difference #17224
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
Hi Ariel wow you’ve been busy

just some more about WHO……

There is a World Health Assembly 23 – 28 May. By what I gather it is a major decision making event for WHO.
Unfortunately I do think the situation is political and outside of WHOs governance but hopefully they may be able to exert some pressure to change things. The recent guidelines from WHO include a lot of Budget Impact Analyses and they are certainly aware and concerned about the situation, as indicated with statement like these:
“Despite these advances, very few persons in LMIC [low to middle income countries] have been treated for HCV infection. The reasons for this are many and include the high cost of treatment…”
“A central barrier to treatment roll-out is cost – this includes the cost of medicines, taxes, import charges, appropriate medical facilities and staff, as well as diagnostic and monitoring facilities.”
http://apps.who.int/iris/bitstream/10665/205035/1/9789241549615_eng.pdf

I couldn’t find an email address linked directly to someone, so I used the general inquiry link
http://www.who.int/about/contact_form/en/

I’ll share how I approached it in case it helps………
I tried to word it as respectfully as possible because I respect the work WHO does and I posed it centred around the following questions:
– direction to any information on the website regarding the crisis that the DAA medication is not being rolled out on a mass scale due to the extreme pricing
– Is the problem on the agenda for the World Health Assembly 23 – 28 May.

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

.
14 May 2016 at 11:15 am in reply to: FixHepC – Party Playlist #17194
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
one more just because the title had me lol

Cydni Lauper – You’re The Reason our Kids are Ugly (too funny, I never knew there was such a song, lol, cover of Loretta Lyn’s original)

[video]https://www.youtube.com/watch?v=nD0fgqpY12A[/video]

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

.
14 May 2016 at 11:07 am in reply to: FixHepC – Party Playlist #17193
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
Listening to this earlier is what inspired the above………..

Cyndi Lauper goes country, yes! I recently bought her new album ‘Detour’ with an itunes voucher that one of my kids gave me for mothers day.

Cyndi Lauper – Funnel of Love (If you like this, have a listen to the original by Wanda Jackson released in 1960, I’ve only just discovered the original, thanks to Cydni, and it’s amazing)
[video]https://www.youtube.com/watch?v=1QBFM0iWRe0&feature=youtu.be&list=PLg9ZzIgtfPDHQjA4_PNR5ukB4Gk1vhPvh[/video]

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

.
14 May 2016 at 11:03 am in reply to: FixHepC – Party Playlist #17192
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
For all the amazing ladies on here

[video]https://www.youtube.com/watch?v=9EboDX_9plU&feature=youtu.be[/video]

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

.
14 May 2016 at 10:51 am in reply to: You can….. make a difference #17191
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
a big cheers to all responses here.

Greedfighter, thanks heaps for your reply, brilliant post and I applaud you for all you’ve said!

I’ve been scouring the WHO website trying to find if they are doing anything, sadly I think they are powerless too. Lots of mention about the UNaffordability of DAAs, stats and a new guideline published last month, along with them being on the essential medicines list for over a year (last May) so they are on the side of the meds needing to be affordable but as I said, they appear powerless too. I’ve sent them an email but I guess it’ll probably end up in the scam folder.

Anyway, like all you guys, I will keep talking to whoever will listen and keep the focus on the fact that it could be any life saving medication that could effect anyone with the way things are.

cheers to you all

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

.
14 May 2016 at 10:15 am in reply to: Feebay, an Alternative Way to Advertise #17188
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
crazy world we live in hey, facebook bans mention of generics and ebay allows the sale of supposed medications. The risks of this stuff are huge, you might be fine if it’s just a scam with sugar pills but it could be anything.

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

.
14 May 2016 at 10:00 am in reply to: GT2 Honks About Generic Sofosbuvir +Daclatasvir (SOF + DCV) #17185
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
Hi GT2,
Wow what great replies to your question about coffee. I find I regularly read posts here and smile at the warmth and care on the forum. It’s just brilliant .

I agree with re_roll about moderation. And Coral’s suggestion about compiling a book and everyone being different too. My hubby started keeping a food and activity diary half way thru the treatment when he had a few problems and it helped to pin point things.

beaches , those pics are amazing, thank you for posting them. I lived in Manly for a few years, its the best ocean pool ever imo. Huge admiration from me with your swimming activity!

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

.
14 May 2016 at 9:24 am in reply to: 2b Juen started dac.sof 9.4.16 hcvl rna 9.5 .16 says undetected #17182
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
looking good Juen, you’re giving it the best shot and can’t lose imo. cheers and all the 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

.
13 May 2016 at 10:14 am in reply to: FixHepC – Party Playlist #17098
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
maybe a cheery song now

Colbie Caillat’s cover of the Beatles’ Here Comes The Sun

[video]https://www.youtube.com/watch?v=M_tSZdQrqkY[/video]

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

.
13 May 2016 at 10:05 am in reply to: FixHepC – Party Playlist #17097
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
this isn’t much of a party song but my recent posts had me remembering this song.
I had bought the album not long after I read the book wikileaks and I was lying in bed with my headphones on hoping the music would put me to sleep, then I heard this song which stopped me sleeping lol. It’s chilling in its instrumental and feeling, along with the lyrics, quite brilliant imo. The singer/songwriter is quite underated and not well known so I couldnt find a youtube link but for those interested, this is a soundcloud link.

The song is called Whistleblower, and the artist is Carus Thompson.

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

.
13 May 2016 at 9:51 am in reply to: Hooray for Dr. Freeman #17095
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
agree with all here
eek, the mention of wikileaks is frightening.
but I’m sure people will come out of the wood work and to support Dr Freeman and he wont be alone….

the movie PAY IT FORWARD comes to mind,
(all the previously helped people who have had access to safe and effective generics will try to help if they can)

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

.
13 May 2016 at 9:36 am in reply to: You can….. make a difference #17094
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
This is not good.
Maybe a start with facebook and complaints that it is blocking freedom of information, seriously how can social media block something like this when there appears so little censorship in other areas. The mind boggles. Sadly it all just reinforces the level of power and greed for profit that exists with big pharma and the ability to do anything if it can connect with greed, fear and apathy in others. I think I have to look at joining facebook now.

Greedfighter, excellent post and you raise some really good points. My initial thoughts about the non-profit in cyberspace idea is that I guess if it comes to that to save lives, yes. But I also think, why should people be forced to hide in the dark to obtain something to save their life when it should be openly available. This is so very much bigger than the DAA medication too. It’s about change and using the hepc and DAA issue to change how the availability of medication is linked directly to excessive business profit with hedgefund managers and business minds at the helm. It’s about any medication that is developed and withheld or inaccessible because of greed for maximum profit. As we all know, this could be any medication (meds for cancer, turberculosis, heart … and the list goes on). HCV suffers have been so incredibly fortunate to have someone like Dr Freeman take action in the hope to save lives. He is an advocate for HCV suffers and I believe he is an incredible visionary too, by doing all he has done (and is continuing to do) in the hope to change things. There are many people suffering unnecessarily because of big pharma’s greed. Imo it has huge social and political issue attached, how can we think we are evolving when one group’s greed negates another group’s healing. So I think that before we hide, we need to speak up but the question is how do we speak up and have an impact. So many good people are trying, advocacy groups etc are generating screeds of paper, it’s in the media but big pharma are still in controll……….. arggghhh!

Hazelriannon, yes… brilliant effort.

tweakmax, yep

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

.
8 May 2016 at 2:14 pm in reply to: Gaj has reached EOT! #16831
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
Fingers crossed and wishing you the best Gaj, things are sure looking good going by your bloods (on your signature)

I don’t post on here much and I regret I haven’t contributed more to the forum but I periodically check the forum and I’ve always admired your posts Gaj. You are an awesome contributor of information and I have so much respect for you and others, along with our hero Dr Freeman, who give so much time and effort to help people, big cheers to you.
And that song is just brilliant too

[video]https://www.youtube.com/watch?v=VpXL1J9ho-k[/video]

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

.
12 December 2015 at 5:11 am in reply to: US Moderator announces our drugs are ILLEGAL #6033
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
Lol

Like covert ops hey Klhilde, top special agent and reconnaissance work there, sounds like you should be the commander too (or what ever the top title is)

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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