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TOPIC: Ireland treats only certain patients.

Ireland treats only certain patients. 5 years 7 months ago #12245

  • Sirchinenge
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So,Ireland was triaging patients treating only F4 with a Min fiber score of 12, they
treated everyone they knew of within budget last year.

This year the plan was to lower the fiber score and treating say anyone F3 and a Score
of 9 I was at the clinic today and asked for an update.

The backstory in Ireland; If you became infected via Blood products supplied via The Irish Health
authority you have being rightly so compensated it includes large financial sums, a medial card,
free dental care private insurance and their own private contact in the HSE in Ireland.

Starting this year, anyone who has had a transplant is being treated with DAA and anyone infected via tainted
blood supplied via the state is being treated too regardless of Fiber score.

You'll have two patients F3 11. One is infected via the state they'll be treated the other patient no hope
of treatment unless they become sicker.

They are basically discriminating against everyone else regardless of liver disease or fiber score, you could maybe
get your head around treating the sickest first to now treat those infected via the state regardless of levels of disease
is going against everything I have ever seen anywhere.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
Last Edit: 5 years 7 months ago by Sirchinenge.
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Ireland treats only certain patients. 5 years 7 months ago #12246

  • Vororo
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Hi Sirchinenge,

I don't doubt what you are saying. But please could you state your source or some links that everyone can look at?

Cheers,

Vororo (28% nit-picker)
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).
Last Edit: 5 years 7 months ago by Vororo.
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Ireland treats only certain patients. 5 years 7 months ago #12413

  • Sirchinenge
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My source is the Dr I saw at the liver clinic on Friday I asked her what the position was in terms
of lowering the score too access treatment this year all consultants had asked them to lower the score
I presume the body that overseas treatment(ICORN) decided on the policy I referenced.

I believe her I also mentioned too my GP who thought it was outrageous.

I don't know there is much information posted publicly about accessing DAA treatment in Ireland other
then the articles I read in the newspapers.

You could write too the HSE in Ireland and ask too comment on the situation I've emailed the
dept in question when I get a reply ill update.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Ireland treats only certain patients. 5 years 7 months ago #12416

  • Ariel
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I have heard about the triage situation in Ireland
Also about compensation for infected by blood product or surgery
I have two people who are sick there in Ireland in my circle of friends from over thirty years. Both moved there from Oz.
Because I love them as friends I follow this issue a bit and I know they're waiting still.
The Irish papers have reported on it from time to time
www.irishtimes.com/news/health/irish-pat...is-c-drugs-1.2190036
I guess this is what Sir is referring to.
I wouldn't be surprised if Australia's promised roll out manifests with similar frustrations but I also am no doctor and although not infected via IVDU I was also not infected in a hospital in my home country. Triage is going to be very interesting to watch here.
I too have knowledge given verbally by the nurse at my local trials and liver clinic and by two physicians in my network but I can't provide today's actual triage patient treatment success to treat from the recent March 1 "hepC cure for all infected Australians" by PBS
I hope that all countries are about curing all people but I am very glad to be on FixHepC meds and UND
Let us know if you get a reply anyway Sirechenge
I am a letter writer and I have lobbied in Oz for some three years because of my own terrible experience prior and a failed duty of care in my case. I lobbied on behalf of all infected
I agree access should be for all, no discrimination
The smartest plan is to eradicate the illness so all should be treated
These verbal conversations you report are hot topic here in Oz I find too.
Cheers
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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Ireland treats only certain patients. 5 years 7 months ago #12417

  • Ariel
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Sirenchenge, compensation was low in Oz
I was infected by medical procedure in a third world country so get no compo but a close friend was infected during major surgery here in Oz in the early 80's and received a pittance
It's an illness that the wider population are still learning about for sure. I personally don't care how people are infected but I do care about treating people like you do. My ideal world would eradicate this illness
It is possible of course given this miracle of science
I'm just stoked to have my generics after all I have been through its been a crash course in learning many things
X
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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Ireland treats only certain patients. 5 years 7 months ago #12422

  • Sirchinenge
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Ariel, the article you reference is before treatment rolled out the policy I am mentioning is
for this year 2016.

They treated all F4s they knew of in 2015 and asked ICORN too lower the score this year the Dr in that
article is my consultant he asked that all F3 be allowed access treatment this year.

This year, they have lowered the score for one group of patients if you're F0 and infected via state blood products
you'll be treated if you're f0 and a IV drug user you won't be treated till every state infected patient has being
seen and treated.

In Ireland, the average compensation is about 250K Euros like I said all ready they have benefits no-one else is
entitled too, I have no problems with them being compensated its the right thing, I do take issue with ICORN
deciding one group of infected patients should be treated over another which is now the case.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Ireland treats only certain patients. 5 years 7 months ago #12424

  • Ariel
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Ty Sir
Well that's a LOT more compo than my friend received
I don't have any issues with anyone getting compensation either it's appropriate
I'm not exactly sure where you are at there as I am in Oz but I do know about delays from friends
The article was suggested this would happen yes?
I also am F0 and before tx had an extremely low VL the highest reading I have was before interferon and it was 420,000
I have also been verbally told here that my wait would be long even now with the roll out on Govt Health, the PBS, yes verbal advice and yes from a liver clinic and yes within the past week
I may be shot down in flames for saying this on a forum but like you I had exactly that said and more to me
Hence my relief that I could afford these meds from FixHepC that have given me my UND at Day 40 testing. Only a month to go I am expecting an SVR
Do keep us in the loop how things are going over there
Rest assured people here are wondering too how Australia will triage all 230,000 patients now the approval nod has been given
As I said I don't know myself but it would be interesting to see exactly who receives tx this year and if there are triage priorities in place.
In any event the hospitals and any doctor prepared to prescribe will be very busy!
Looking forward to your update
Cheers
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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Ireland treats only certain patients. 5 years 7 months ago #12432

  • Sirchinenge
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The article is written in April 2015 they allocated the funds in May 2015 and started treating
the F4s and above, by Dec 2015 they have treated everyone they knew of.

Instead of lowering the score too everyone this year they have lowered it to treat any F4
( None left) any patients post transplant( Maybe 40 per year) and anyone regardless of
fiber score if infected via blood from the state if the budget is the same as last year I think
about 700/1000 patients will be treated this year.

If your friends happened too be F0/F3 and infected via state blood products they will be
treated this year budget depending they no longer have too be a 12 or F4.

Last year they had 36 Million Euro allocated too treat Hep C patients with DAA medications based on the price
they paid they could have treated about 700 patients. Apparently there was only 400 patients too treat
instead of starting to treat F3 they stopped treating,period.

Now, we have a unique situation you'll have two F0s one will be treated the other won't its that simple.

Lastly, out of the 400 treated last year at least 10 have died from liver disease which is very sad.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Ireland treats only certain patients. 5 years 7 months ago #12439

  • Ariel
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:(
Very sad indeed
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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