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What's best info for specialist on generics? 6 years 10 months ago #3488

  • CJ
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Hi,
I'm going to a liver specialist Thursday, with a friend, he's a Vietnam vet that my husband is trying to help.
He got the virus back when they used to jab all them all with inoculations, using the same needles.

He's on his 2nd liver transplant.Not doing too good.
He's a GT 1a.

I'm sure he should be allowed the orals on compassionate grounds, but he hasn't so far.
So the next step would be getting the generics for him?
I'm going with him this time to speak to his specialist, sometimes these poor blokes get lost in the cracks.
Get brushed aside.

He has a lot of bad hep sides & is a foggy state all the time.
he needs someone to be his voice & I'm going to try.

Can anyone please suggest the best info here to copy & take in to present to the Gyno? so he might consider being in agreement with it all instead of brushing it aside, like many of them? ( any doc up here in Sydney has done this to me)
He's going to the RPA here in Sydney.

Thanks for any suggestions. :)
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

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What's best info for specialist on generics? 6 years 10 months ago #3491

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"Hi Cindi,

You are amazing!

I can't give a lot of help other than to suggest that the specialist at RPA is likely more than aware of the generics and where they can be sourced. I suspect your best option is to be your friends medical advocate and first find out:

Why he hasn't been offered compassionate treatment?
Is he physically able to use DAAs? i.e. branded Sovaldi or whatever.
What, if any, are his other options?

So, find out as much as you can about how the specialist (his regular one?) views his patients situation/prognosis first. Be your friends health advocate first rather than a Generics advocate. This may even give some clue as to the likely response when/if you do bring up the subject of generics.

Also, try and contact Joan from this site. I believe I saw her comment in one of her posts that she was being supported by RPA in use of generics so may be able to provide guidance.

G
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Last edit: by Gaj.

What's best info for specialist on generics? 6 years 10 months ago #3494

  • zhuk
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Hi Cindi,


Amazing yes that this poor bloke has seemingly fallen through the cracks in the system, considering his state of health...and all props to you for your compassion in assisting him. Absolutely as GAJ says Joan would be a useful point of contact as she has been monitored at RPA. It is my clinic too and they are completely willing to oversee my treatment (although they can't provide a script) so I don't see any hurdles in your friend obtaining assistance from them.

All the very best of luck with the meeting :)
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
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What's best info for specialist on generics? 6 years 10 months ago #3502

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Thank you so much for the good advise.
I've sent Joan a PM, hope to hear something soon.
Appreciate all the help :)
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

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What's best info for specialist on generics? 6 years 10 months ago #3503

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No problem Cindi, hope it goes well :)
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

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What's best info for specialist on generics? 6 years 10 months ago #3553

  • Archer
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Cindi;

Last time I went to the RPA seeking intervention ( as you know I had been listed with them for suitable trials, and gone down to Sydney for routine appointments accordingly) - I was told that their cut off for DAA provision (at the time I thik it was sofosbuvir) on compassionate grounds was Meld 15. Because my Meld score was calculated by them at the time at 12 - they could not give it to me. This may due to Pharma's stipulations or simply where they have had to draw the line on the basis of the quantity made available. Otherwise, I found the RPA Prof. & staff very kind considering that I wasn't technically one of their patients - they even checked the lesions on my MRI scans for a while - until I was referred here to a Brisbane surgeon now checking 12 weekly.
Your friend sounds quite unwell and from all you have said on forum and told me by phone - I imagine your friend may be eligible for the DAA's ( if he again transplant listed it would seem unlikely that his Meld score wouldnt be sufficiently or reasonably high. Take his bloods, fibroscan, meds list, dot pointed recent history of symptoms & events etc - the usual. Oops sorry have to rush to work. ...will get back if I think of anything more useful to say ..
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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Last edit: by Archer. Reason: correction

What's best info for specialist on generics? 6 years 10 months ago #3554

The BMS dac compassionate access programme is still running in Hobart and it was nationwide I believe. If I got it, he should definitely be eligible. Then he'd just need the Sof.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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What's best info for specialist on generics? 6 years 10 months ago #3558

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Hi Chester,

Thank you for that.

I could discuss it with the specialist I guess if he allows him to have that compassionate orals.

If he's generic friendly, I will buy the Sof for him through the hepcbuyers club, as he doesn't have hardly any money.
We'd do that for him if it gives him the best chance to get rid of the hep as he's such a great bloke.

I'll wait to bring up the generic Sof with the Prof. after & if he agrees to the other orals.
Can you tell me why he should have the Sof added? ( so I can put this to the prof.)?
Thanks & hope you're going well Chester.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

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What's best info for specialist on generics? 6 years 10 months ago #3559

  • CJ
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Thanks so much Archer :)
Will talk to you later
xo
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

Please Log in or Create an account to join the conversation.

What's best info for specialist on generics? 6 years 10 months ago #3560

  • CJ
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Chester just sent you a text on your mobile.
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

Please Log in or Create an account to join the conversation.

What's best info for specialist on generics? 6 years 10 months ago #3562

  • CJ
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Just found out through Joan that this specialist is aware of the generics, and not adverse to them, so hopefully all will go well tomorrow :cheer: :cheer:
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

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What's best info for specialist on generics? 6 years 10 months ago #3563

He needs the Sof because dac is no good on its own. But the Prof I assume is a liver specialist so he'll know that. Maybe riba too but that won't be a problem. I don't know of any comp access available ATM other than the BMS dac. I think the Abbvie programme is done and haven't heard of Gilead offering anything. It's almost 4 months now since Royal Hobart agreed to put me on the dac comp access programme knowing I would be taking it with generic Sof. And last I heard, BMS didn't care that people were using their dac with generic Sof.

But note that the Prof probably won't be able to write a script for generic Sof in his capacity as a public clinic liver specialist. You may be able to see him privately to get it which is what I did. Or you can go through James or somebody else who will write it.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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What's best info for specialist on generics? 6 years 10 months ago #3564

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CJ wrote: Just found out through Joan that this specialist is aware of the generics, and not adverse to them, so hopefully all will go well tomorrow :cheer: :cheer:



Absolutely Cindi...was a relief to me too when I found that out, since my GP wasn't agreeable re monitoring. Best of luck for tomorrow :)
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
The following user(s) said Thank You: CJ

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What's best info for specialist on generics? 6 years 10 months ago #3565

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Hi Chester,
I see, ok, well if that BMS one's still available or whatever is I'll tell him we can access the Sof ourselves through here.
Thanks so much Chester.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

Please Log in or Create an account to join the conversation.

What's best info for specialist on generics? 6 years 10 months ago #3566

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Not sure Archer what his "meld score" is?? I know he has to have stents? done about every 3 months.

Never been to hospital with him before, my husband did once to talk to nurse, but he didn't really know what to ask or anything.

Think she said something about that his last liver was the one that did all the damage & not this one?
but surely they don't want to have to "wait" 'till this one's so bad another transplant is required, I bet he wouldn't get another one, they'd just let him quietly pass away, out of sight out of mind....

I'll get into "interrogation mode" for tomorrow , it's just not fair how some are treated. they just get forgotten.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

Please Log in or Create an account to join the conversation.

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