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Reorganising the discussion forum 8 years 6 months ago #1179

  • emilio
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Well yes my comment was tongue in cheek. However, if mesochem wants to donate a million or so, perhaps we could commence doing home deliveries. Joint sponsorship mesochem and fedex. Sorry Klhilde, was joking. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.

Reorganising the discussion forum 8 years 6 months ago #1192

  • Jolie
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Joy wrote: I think it was a joke?


yes,
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.

Reorganising the discussion forum 8 years 6 months ago #1194

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klhilde wrote: NO!

Branding is one thing, but any hint of profit would run this service afoul of the law. In no way, shape or form should we be suggesting that this site should make profit.


I don't think anyone suggested or used the word "profit" or business,
I used the word" global brand" in a more practical/organisational way & it was half a joke anyway, a sort of British humour if you like,

Said that & talking only theoretically, there are many Global Aids support organisations run as Charities & not a businesses , they don't make profit.
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.

Reorganising the discussion forum 8 years 6 months ago #1231

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Well I think it would be okay to make money as long as it was going directly to curing hep c. I mean I have been thinking that there are many cirrhotics that I know cannot afford the $1.5K to do this and have about as much chance of flying to the moon. I am so privileged in comparison to most people in this world. If we could fund access for these people, via clever marketing wouldn't that be something? Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Reorganising the discussion forum 8 years 4 months ago #3294

To Whoever relocated my EU Information Topic to its proper place: Thank You!
Mike
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Reorganising the discussion forum 8 years 4 months ago #3302

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emilio wrote: Well I think it would be okay to make money as long as it was going directly to curing hep c. I mean I have been thinking that there are many cirrhotics that I know cannot afford the $1.5K to do this and have about as much chance of flying to the moon. I am so privileged in comparison to most people in this world. If we could fund access for these people, via clever marketing wouldn't that be something? Em



Absolutely with you, em. I have been extremely fortunate to have been given the chance to access treatment, and being nowhere even vaguely near cirrhotic, I can't imagine the anguish those sufferers must go through if they learn about generics but cannot access them. If we could work out some way of generating an income stream which doesn't compromise the club's legal status as a facillitator only, then hell yes I think we should go for it.
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

Reorganising the discussion forum 8 years 4 months ago #3304

Well, if everyone who needed, say, three months of treatment, but could easily afford to buy four-like me-then we could help cure one person for each three who chose to help.
Just a thought.
Mike
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Reorganising the discussion forum 8 years 4 months ago #3305

  • Vororo
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Hi mgalbrai,

Yes, I totally agree with the idea that those who can afford it could make some kind of donation to help others. I posted something on this before. Sabrecat also made some great suggestions

fixhepc.com/forum/have-your-say-with-the...s.html?start=24#2276

fixhepc.com/forum/have-your-say-with-the...s.html?start=24#2276

But this could raise several problems:

1. It would stop the buyers club from being purely that - a buyers club - and make it into some kind of dispensing charity.
2. And how would the club choose you should get the treatment - first-come-first served? means-tested? severity-tested (priority to F3/F4?)? What a horrible decision for someone to have to make. Most of us are here on fixHepC to get away from all that nonsense in our home countries.

OK, maybe there is still a way - a monthly lottery, for example?

But I do think to protect James and Friends from being accused of "doing business", any kind of money-rasing system for those who need it should be organised (and registered) as a separate charity...

Well, that''s my two-cents-worth.

Best,
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).
The following user(s) said Thank You: dointime, Joy, mgalbrai, Chejai

Reorganising the discussion forum 8 years 4 months ago #3306

Yes,
Absolutely nothing needs to remotely jeopardize this pathway to affordable treatment.
Mike
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
The following user(s) said Thank You: Vororo

Reorganising the discussion forum 8 years 4 months ago #3646

  • Archer
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I don't believe mods should delete posts or threads on the forum - only the founder for "security" & "politically sensitive" reasons.. Too much power in the hands of too few. Too Krystallnacht for me.

In 2014 when the Govt approved simeprevir and declined sofosbuvir on "cost effectiveness" grounds - they immorally failed to overtly disclose that this decision effectively warehoused the most high risk patients who could not medically tolerate the simeprevir/IFN treatment - and were literally being left to die. For all the vanity this country projects about its benign social orientation - I still remain appalled that this fact is so overlooked and under-reported. Despite the public victim blaming - most informed citizens would not see this as the "australian" way.
I would be happy to contribute to a fighting fund to provide insufficiently resourced individuals who comprise this high risk group with treatment - I would like to know that on our watch we have tried to care for those in most need. There are clever people on this team whom can surely find a way to structure this without compromising our "existing" services. Doc James and his excellent team have created a compassionate and well executed social endeavour - I would like to see members honour its purpose in this way. Many of us aren't personally well resourced but having found the funds to treat ourselves perhaps we can each dig a little deeper. Christmas might be a good time to juggle some priorities and seed the fund. It need not be ambitious but to have a little help on hand for those who can't afford treatment seems a good caring of each other. kind regards Archer xx
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
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Reorganising the discussion forum 8 years 4 months ago #3651

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Some kind of totally separate charitable organization, legalized under Australian, or US or whatever country's laws, that simply maintained and dispersed the funds. People who found their way to fixhepc who didn't have money could be directed to apply to the hepcure charity fund. Whoever would be overseeing that charity would have to screen the applicants for eligibility and whatever criteria was decided to be used. Then if approved the Hepcure charity fund could send a voucher, or payment to Dr. Freeman or one of the compounding pharmacies in the name of the approved applicant to have their meds delivered to the approved applicant. I think that way it could never be argued that the two entities were comingled. Maybe even more so if the "fund" were set up in a country other than Australia, but maybe that's overkill, maybe the US would actually be a bad place for it, things aren't exactly not scrutinized around here these days as Mr. Snowden showed us....just my random idea, for the discussion.
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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Reorganising the discussion forum 8 years 4 months ago #3653

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Im with Archer Id be happy to get invoved in a .fighting fund for less fortunate folk. I know the tassie crew are doing some work for the real dire cases etc. But this could be more about lack of affordibillity.

Innregard to mods deleting posts etc, i personally have only deleted one post which was rascist at the request of another member. The other was some shonky scammer. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.

Reorganising the discussion forum 8 years 4 months ago #3655

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Hi 2b,

Thanks for this: I can see a lot of benefits with a "HepCure" charity:

* It could be a kind of agile Medicines Sans Frontiers, focused on Hepatitis C action NOW

* As a pure fund-raiser, it could operate anywhere and everywhere

* It would be independent of medical decision-making (while fixHepC needs Dr prescription)

* It would be at arms-length from all patent / licence / importation issues

* It could fund free treatments in poor / developing countries (absolutely nobody left behind)

* As a registered charity, people could get tax breaks by making donations (bigger bang-per-buck)

* ... ?

Well, these are just a few quick thoughts. I am sure there must be many more possibilities...

Vororo.
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).

Reorganising the discussion forum 8 years 4 months ago #3658

This is great that you are all starting to talk about helping people who genuinely can't afford it. I think you should approach an already established not for profit. Speedy implementation is of the essence. I think Australians should get first preference. As regard to marketing for funds, how about first point of call -doctors. I have approached a couple of groups but I am not hopeful, still waiting for a reply to" just an idea". But with the groups impeccable credentials you may have more success. It would be even better with the support of the Hep organisations. Put pressure on them. There would have been no Hep organisations if it wasn't for the old timer heppers. I think they forget this with their growth of ego. I remember the very first meeting at Fairfield infectious diseases hospital. But you will get a better idea of urgent needs once the government makes a discussions.
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Reorganising the discussion forum 8 years 4 months ago #3665

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I am now 2 weeks in with Sof/Led tx and seeing the results of others gives me a lot of confidence in the outcome. I am so incredibly thankful for this opportunity that others didn't/won't have that how to "pay it forward" has been on my mind. I thought it might have to be down a more personal approach/assistance so it has been great to read this thread. Although I may still do this I would be happy to assist in a more organised approach and there are some great ideas here. I guess it's about finding the right way in. Starting small and simple but with the ability to grow.

Coral
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24
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