emo UK NHS in for a Shock

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6 years 6 months ago #5290

Well, it seems that the Indian generic Harvoni has finally arrived. I see lots of pictures of bottles from various companies appearing on this site. The next thing that is going to happen, I have no doubt about it, is that a whole lot of hepC sufferers in the UK are going to obtain these bottles. Well, what other choice do most of them have? They are then going to take them to their GPs and their liver specialists and ask for medical monitoring of their treatment.

What are all the NHS doctors going to do then? So far they have gotten away with dismissing the few miscreants, the lunatic fringe, that have suggested treating with generics. Let them try dismissing the numbers that are shortly going to arrive; fathers, mothers, children, grandparents, all debilitated by hepC and prepared to pay for their own drugs to get rid of it. Not so easy to dismiss them as to get rid of the odd irrational, neurotic female who is not even at death's door and yet still wants treatment.

Something is going to give. What about all these people who will be left milling around in the street waving their bottles of generic Harvoni and vowing to take the pills with or without help from the NHS? What about the spectre of somebody dying while on treatment after they had asked and been refused medical monitoring from an NHS facility? The news reporters out there had better get their pencils sharpened because this is coming to a street near you. If the UK doctors feel uncomfortable about the generics now, they ain't seen nuthin' yet.

dt

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6 years 6 months ago #5298

The options are treat them like criminals or fold and change policy, i'm betting the later. It was only weeks ago that members were reporting being treated as lepers by their liver clinics here, now they have changed their tune somewhat. Eventually the tide will turn.

I will add that given our govt has to try and win an election next year with an economy that is slowly sliding backwards, affordable access for all isn't going to happen here anytime soon. They have cash that was earmarked for interferon that isn't being spent so I expect they may approve the DAA's for cirrhotics early next year..

cheers


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
Last Edit: 6 years 6 months ago by Paul-Jarman-facebook.

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6 years 6 months ago #5321

It strikes me that the routine excuse trotted out by UK doctors - well, how do we know that the meds you bought are genuine and don't contain anything harmful - is completely ridiculous. If that was really what was concerning them then they'd make testing facilites available for free or for a small fee to patients who have spent their own money to buy the generics. It's not like the NHS doesn't have facilities capable of doing the job. But they shake their heads and hum and haw and act like they themselves were standing on a street in Delhi or Dhaka and trying to make a clandestine deal with some street peddler. That's how they think we do it.

For heavens sake, the NHS has the power of some of the worlds finest medical facilities at their disposal, all paid for by UK citizens. I think it is about time that UK citizens who have hepC got the benefit of those facilities. How dare they shed crocodile tears about the dangers of counterfeit drugs and at the same time lock us out of the affordable means to test our drugs. How have they gotten away with this hubris for so long? It is a house of cards and it is going to come down around their ears.

dt

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6 years 6 months ago #5322

They aren't really afraid of the drugs .... they are afraid of the consequences of going against the system.

Their stated fear of the drugs is simply the spinning, spinning, spinning of their rationalization hamster.

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6 years 6 months ago #5323

dointime wrote:

It strikes me that the routine excuse trotted out by UK doctors - well, how do we know that the meds you bought are genuine and don't contain anything harmful - is completely ridiculous.
dt

Thats like the disclaimer at the end of any public statement by the TGA or Hep not for profits here in Oz as well. It is however understandable in that if we end up with some people reporting getting ripped off buying generics on line it will hurt the credibility of genuine suppliers.


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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6 years 6 months ago #5356

"Thats like the disclaimer at the end of any public statement by the TGA or Hep not for profits here in Oz as well. It is however understandable in that if we end up with some people reporting getting ripped off buying generics on line it will hurt the credibility of genuine suppliers. "

The best excuses and rationalizations are always the ones that are understandable. They have appeal, particularly when they appeal to the real and justified fears that people have. This type of excuse cannot simply be dismissed, which is why this one has proved so effective in deterring people from buying the generics.

But don't be fooled. It is still propaganda intent on controlling the supply of generic drugs to the people who need them. It didn't stop the good Doc here. He's testing all the meds that pass through fixhepC. Problem solved. That's how you can tell those with genuine motivation to cure hepC from those who only want to scaremonger. The sooner the NHS gets at least one test centre set up in the UK with mail order access, the sooner we might be inclined to trust anything that they say.

dt

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6 years 6 months ago #5357

"how do we know that the meds you bought are genuine and don't contain anything harmful "
This is what you hear all over. I heard the same in my country but then this month when the fibroscan showed 20+ kpa they got me the Harvoni. I can just say lucky me but what about the others ?

I say let them get the generics and atleast treat them if the state wont pay for the meds. People are willing to pay for blood work etc. but you dont find the docs to monitor


Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
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6 years 6 months ago #5358

So, to any doctor who trots out the counterfeit drug excuse to you I say - offer him / her this deal:

You will supply one of your pills to be tested by them. If the tests prove that the pill is genuine and free from harmful substances then they will agree to monitor your treatment.

That should put the cat among the pigeons. The response you get will show you pretty damn quick where your doc's heart lies.

dt

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6 years 6 months ago #5367

Yes, I believe this to be true, but there are a few Drs monitoring in England on NHS, so ut is possible , if they are up for it.


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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6 years 6 months ago #5368

Whilst I agree with you the lack of monitoring by the NHS for patients on generics is a serious
problem I don't agree at all you'll have endless patients buying generics.

Let me explain why. The UK has free health care as such the population at large believes they will get
access to treatment free.Maybe those educated about Hep and generics will pay I doubt the majority will.

For example,Greg and James have had very few patients UK use their services,sure it was some what
difficult to access the patients that payed are used to paying for care( Australia,USA East Europe).

I think its a cultural thing I don't know the price dropping down to 1k less will have that much impact, I
hope I'm proved wrong. I hope as many people as possible buy generics and get cured.

Looking toward the future, I think we may see price drops across the board that will allow everyone to be
treated.

PS; I've said a few times,someone should attend a citizens advice clinic about the lack of monitoring patients
on generics,I think there is a legal duty to look after patients.


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: 6 years 6 months ago by Sirchinenge.

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6 years 6 months ago #5369

Not sure how far into the future you're looking Sir. Gilead have made it quite clear that they see the European 'market' as being very lucrative for years to come.

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6 years 6 months ago #5372

I've been to the citizens Advice Bureau. Because it is NHS they refer to PALS. PALS will hum and haw because they usually advocate for NHS patients who are dissatisfied with treatment that they have already received which they have a complaint about. If the complaint is about treatment not received, using drugs that are not NHS supplied, then good luck with that. Somebody might have some luck with this process but I didn't.

The UK is famously a multi-cultural society. Indians, Pakistanis, Jamaicans, Arabs, East Europeans, Chinese, etc., they are all here. They mingle and they also have their own core communities. Handouts of any kind are not part of their culture. They expect to pay and are pleasantly surprised if they don't have to.

Anyway, as to how many UK patients will go for the generics, only time will tell. Most of them are currently being disabused of their belief that they will get access to free treatment for their hepc before they die. As time goes on, disillusionment sets in and the penny drops, what will they do then?

The threat of death transcends all cultural norms. I saw an entry a while ago which moved me greatly. This person said something like, and I hope they don't mind if I recall it, "I will crawl over broken glass to get my meds"
Do you really think that a person who feels like that is going to sit complacently watching the NHS fiddling while Rome burns.

dt

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6 years 6 months ago #5393

Um, Australia has socialised medicine. But it works differently to the UK system. I didn't have to pay for any tests or monitoring. Even if someone had to go private because they couldn't find a doctor to bulk bill them under Medicare, they would usually get some money back.


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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6 years 6 months ago #5395

Too right Chester. I'm of fairly meagre financial means but paid $335 recently for a private hospital-conducted nerve conduction study (as waiting until May for the public waiting list didn't seem clinically uh, wise), and got back $190 rebate. Obviously doesn't work this way in the UK..but then things like optical & dental are publicly covered that aren't here.


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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6 years 6 months ago #5550

I was wondering have you started treatment doingtime.


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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