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TOPIC: You can..... make a difference

You can..... make a difference 2 years 1 month ago #15940

  • DrJames
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So Facebook have taken to blocking any mention of generic medication, and...

The TGA (our local FDA) is on my back (again), and...

The TPP looks like it could block access to generics, so...

I'm posting this to ask you for your help. Not go public help but more like think global act local help. You have a contact network you can inform. Maybe you don't want to inform them as real you, but you can still be anonymous not you.

Generics are here now and they work, but...

Not enough people know that.

We all have our own contact networks so what I would like you to do is this:

Spread the word any way you can. Shout it from the rooftops, or, if you're not a shout it from the rooftops kind of person make an anonymous profile on any website that seems relevant and speak to the news. Your news. Your experience. Keep it real. Cure is here, now, but it may not be forever, so don't sit on the fence. What's here today could be gone tomorrow.

Big Pharma is the single biggest industry in the Western World bar government. It's well funded, ruthless, and moving to protect its business interests. In a pitch to Y Combinator about expanding operations the feedback was:

1) Nice idea
2) Sovereign risk ie legislation can kill you at the stroke of a pen (meaning the TPP) and
3) Yes we did take on the taxi industry with Uber but you have to be out of your mind to believe you can take on Big Pharma

And yes, that was a sorry no, we won't back you.

Let's prove YC wrong and Nancy right.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.

-- Margaret Mead
YMMV
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You can..... make a difference 2 years 1 month ago #15968

  • Greedfighter
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I had an idea that may be far fetched, but with some input and tweaking could prove effective in the long run.

At this point, the Courier delivery systems (FedEx, DHL, postal services) are still making deliveries of the meds.

Third parties who have access to these meds are still able to ship to many places.

What is needed is an RX from a doctor. But based on my experience in USA, a Tasmanian doctor was able to write an RX that I used to get a third party in Bangladesh to ship to me via DHL My package was in customs for 2 hours. That is the time it took them to get to it.

The problem is this: a doctor who will write an RX, and getting the word out, without having a commercial interest or profit motive, which then makes it illegal.

So what if a Non-profit was established - in Cyberspace, with a registration in the Cayman islands, or China, or whatever nonsensical place that will allow it without scrutiny -- that took donations for advertising and operations, but was based in a server in China (that does not honor the patent) and used the money to advertise and advocate and arrange for RX's in the event GP2U is no longer able to do so. I bet there are doctor's in the world who will issue an RX for the right price. Utilizing the TOR browser, total anonymity of the participants in the organization can be kept secret. Officers in non-profits can pay themselves millions if the donors don't object. Which could bring in sophisticated hacker types who can pull this off (ironically, perhaps criminal organizations doing good to profit against immoral companies).

And let's not forget the Bangladeshi medications, notably Twinvir, unlicensed, as a developing country, Bangladshi pharmaceuticals are protected against patents until 2033 by the WHO charter. It's why they were first to market, They don't need no stinking license. These little rascals could turn up all over the place via third parties :cheer:

Gilead could stop Indian generics now if thet wanted to, But are powerless against Bangladesh until 2033.
Just saying...
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
Last Edit: 2 years 1 month ago by Greedfighter.
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You can..... make a difference 2 years 1 month ago #15970

  • Hazel
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I rattle every cage I can think of but in terms of getting the message out, right now locally we are concentrating on getting doctors to listen: because they have the medical records, they could contact patients whereas I can only reach people through media, when I can get it. This is something we could all do- contact medical centres. Letters, emails, talks: remember globally that medical professionals and their various organisations - (also worth a letter, must get on to that) are at the forefront of opposition against TPPA because they know what an enormous effect it will have on medication prices.

I will try and get onto posting some template letters that people could adjust by country, doctor etc. But the most powerful point, in terms of reaction, is always going to be our own personal one. Mine was, that naively last year, I was somehow sure that if something that could save me came along, the hospital here would be the first to hear of it, and then my GP, and one or both would have told me, and every diagnosed person, in a matter of days, not weeks or not at all. I trusted them to do that. It makes doctors mutter and squirm when I point out how far that is from the truth. I do see this as a narrow window of opportunity- no hepsters should be complacent and nor should doctors. As we have seen, only takes one or two to make a huge difference- UK has barely got that. EASL shifted their first point of opposition- go in armed with that.

Anyone feel free copy to adjust this- the links we put in follow up email we sent after dream team Tina, Allison and I went to some llocal GPS. you could just make it part of a campaign to contact doctors near you by email- just write your own start. We included the links we thought would most appeal to busy GP's. The first one obviously only applies to NZ

Dear.....

Prof Ed Gane on National Radio 4 May discussing Pharmac announcement and community roll out:
www.radionz.co.nz/national/programmes/mo...advance-for-patients

EASL endorsement on efficacy of Buyers Club- first results presented April 2016:
ilc-congress.eu/low-cost-generic-direct-...randed-formulations/

2 minute interview with Dr James Freeman just before that presentation:
www.medpagetoday.com/MeetingCoverage/EASL/57399

Simple drug interaction tool to measure the direct acting antivirals against from Liverpool University:
www.hep-druginteractions.org/

The GP cheat sheet is found under the forum tab: fixhepc.com/forum/forum-gp-cheat-sheet.html
This is the decision support tool, which is the prescribing tool I showed you. fixhepc.com/hcv
. If you want to see everything on the site you would need to create a login.

Anything is searchable from the front page (eg melatonin or pawpaw) if you have a question. The Redemption Trial/ buyers club has various links throughout the website,

etc.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan 40 down to 22 by 29/3/16- now down to 7, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Last Edit: 2 years 1 month ago by Hazel.
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You can..... make a difference 2 years 1 month ago #15974

  • tweakmax
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Make Fixhepc a movement

Cut off one head another takes it place

FixhepCCCCCCCCCCCCCCCCCCCC!
Last Edit: 2 years 1 month ago by tweakmax.
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You can..... make a difference 2 years 1 month ago #15977

  • Tricia
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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


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You can..... make a difference 2 years 1 month ago #15985

Shall be writing to my local Members, Newspaper, Hospital and every medical clinic in Bendigo and the main Hospitals in Melbourne......hope this helps just a little. And I will get my FB family to share a post I will put up over the weekend regarding my journey with generics. I have no problem with people knowing who I am...my FB family know now as does my employer and all the staff at work and my small but wonderful network of close friends. :)
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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You can..... make a difference 2 years 1 month ago #15987

  • Vororo
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hazelriannon wrote:
I rattle every cage I can think of but in terms of getting the message out, right now locally we are concentrating on getting doctors to listen: because they have the medical records, they could contact patients whereas I can only reach people through media, when I can get it. This is something we could all do- contact medical centres. Letters, emails, talks: remember globally that medical professionals and their various organisations - (also worth a letter, must get on to that) are at the forefront of opposition against TPPA because they know what an enormous effect it will have on medication prices.

Great post Hazel!

The message that generics work and are available on-line is getting out. Even the UK Hepatitis C Trust (and that's "C" for Conservative) now gives advice on accessing generics (mentions FixHepC):

hepctrust.org.uk/buying-hepatitis-c-drug...3-what-you-need-know
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).
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You can..... make a difference 2 years 1 month ago #15990

  • LondonGirl
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Tweeting galore !
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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You can..... make a difference 2 years 1 month ago #16027

  • Greedfighter
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Hi Tricia,

And thanks to everyone who gave my crazy idea a thumbs up.

Tricia, what I proposed is really only a global version of what Dr. Freeman and GP2U offer now. I got an RX from GP2U, to buy Twinvir from a third party in Bangladesh and have it shipped to USA. The US government has no control of GP2U, Incepta cannot ship to USA, it had to come from a third party. But that was arranged because I paid for it. So likewise a foreign doctor who is paid by a hidden organization may be able to ship meds to Australia or elsewhere.

Unfortunately, this opportunity will only ever be available to people like us, who say "NO. There is a cure available and I am going to get it . F*** YOU" The system will not help you.

My GI specialist made an independent appeal to the government here 5 months ago, after I was denied 3 times by my insurance. The government has not responded. Meanwhile, I am undetected. Because of my efforts, and the help that was available.

I have faith that the wink and nod policy will stay in effect.

The customs man says "Look, I can't believe they are trying to import these meds, as he allows it to continue down the conveyor for shipment ;) It's not about the law at this point. It's about making them enforce it on a personal level.

I had not only my treatment sent to me from Bangladesh with an RX attached, but someone sent me some pills from Australia that were declared as "Liver Salts", with a letter inside describing that they were Ledipasvir and Sofosbuvir tablets. With no RX attached. And I received them.

:cheer: :+1: USA!
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
Last Edit: 2 years 1 month ago by Greedfighter.
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You can..... make a difference 2 years 1 month ago #16060

  • Price
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James-Freeman-facebook wrote:
So Facebook have taken to blocking any mention of generic medication,
I asked one of the forum's owner/administrator to pass the message to all the forums. Pretty much what he says goes so the message will stay up.

All right, I'll see what I can do.

P.
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You can..... make a difference 2 years 1 month ago #16062

  • Tricia
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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


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You can..... make a difference 2 years 1 month ago #16072

  • Ariel
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Hi
I just mentioned that the WHO was my next stop to Gaj last week. After all, it is a global epidemic.
I'm tired of lobbying govts and drug companies about access to meds but I think the TPP has my interest at this stage. Here are some of the ones I have done so far. I'm in Australia. Victoria.

This email address is being protected from spambots. You need JavaScript enabled to view it.

www.alp.org.au/contact

Gilead
333 Lakeside Drive.
Foster City, CA 94404

Liberals: Ministers Ley, Hunt, Dutton (ex Health Minister,
Premiers Baird and Andrews
(NSW and VIC)

Bristol Myer Sqibb ( was desperate at time trying any door)

Anyhoo I am hitting up the WHO too
It's fair enough and I can't think of anyone else to talk to locally my list is pretty comprehensive for a lil mermaid.
Anyway
On a positive note we all blocked the Don't Kill Bulk Bill the news went up today on the Aust path site.
And if you want these local numbers or contacts I also used to make phone calls but not any more yes I am WHO now.
Global epidemic I say.
Ariel




Attachments:
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
Last Edit: 2 years 1 month ago by Ariel.
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You can..... make a difference 2 years 1 month ago #16073

  • Ariel
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Hi again
I should have mentioned because it's relevant
I always received a reply
I am sure even the junk is read
I actually prefer letter writing however and phone calls. Registered Post for a letter
Ariel
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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You can..... make a difference 2 years 1 month ago #16085

  • Geno1b4
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I've been posting in all forums I can register on, about generics, FixhepC.com and Greg Jefferys, in Serbia and abroad.
So far no forum bans :)
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
Last Edit: 2 years 1 month ago by Geno1b4.
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You can..... make a difference 2 years 1 month ago #16088

  • Tricia
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Hi Ariel wow you've been busy :+1: :)

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.”
apps.who.int/iris/bitstream/10665/205035...789241549615_eng.pdf

I couldn’t find an email address linked directly to someone, so I used the general inquiry link
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


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