emo NHS funding cuts forcing people to buy medicine through Facebook

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5 years 10 months ago #21479

You think they would have mentioned fixhepc somewhere in this story. Whoever did the research for this story came up short on purpose. No way in hell they wouldn't have found fixhepc.com.
www.independent.co.uk/life-style/health-...g-cuts-a7295796.html


Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
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5 years 10 months ago #21480

Wow Tommy,
What a tangled web of greed and corruption .... sounds all too familiar.
Thanks for the post,

Matt


GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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5 years 10 months ago #21483

Sadly, the current UK government are running down our once great NHS, attacking the hard-working staff and causing many hospitals to go into 'special measures' - ie failing. The Ambulance service is at the point of collapse, appointments and operations for serious illness are being cancelled and yes, they are restricting many medicines.

My local hospital is the latest to go into 'special measures' - Staff moral is very low, many becoming ill with stress, like many teachers in the state education ststem, illness' caused by stress.

There is a crisis is social care provision, elderly people blocking hospital beds as no care available in their homes. A & E patients lie in corridors for hours on end untreated, ambulances queue outside as no beds etc etc This Gvt want it to fail, so they have a case for introducing private insurance schemes.

It's shocking and depressing for many of Her Maj's subjects. Regression, not progression.

Many of us have known this for some time, the general public are just starting to realise the reality, it's a badly run system at breaking point. OK if you're wealthy / young enough to pay something like BUPA.
I hear they're setting up a charity for the baby-boomers, to help them as they get older, as this age group won't get insured.

This will affect HepC age bracket in particular.
Sad times.

Personally, I was refused a VL test this week, even though I saved the NHS ££££s in treatment and have not had a test since EOT. The GP surgeries are watching the pennies too. You get a lecture if you ask.

I know someone with cirrhosis who was only given 12 weeks Harvoni, still detected at EOT they told him he would clear and not to worry. The lack of money is one thing, the lies are quite another, this guy just relapsed.

Sad song.


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
Last Edit: 5 years 10 months ago by LondonGirl.
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5 years 10 months ago #21484

Thanks Tommy,

It seems to me like this article from the British "Independent" newspaper should go into the myth-busting thread, but I see that some people are having second thoughts about myth-busting. Maybe instead of "myth-busting" we should call it "crap-busting".

In the English language, "crap" has long been associated with the kind of solid waste material that goes down a toilet drain, thanks to the inventor of the first water-flushable toilet, a Mr Thomas Crapper:

en.wikipedia.org/wiki/Thomas_Crapper

But according to that Wiki article the word has a much longer history than that. Anyway, crap is crap even if it comes from a respectable British newspaper.

Crap:

"However, experts warn that people who do so [i.e. personally import generic HCV treatment] have no way of knowing if the medicine which arrives is real. They have cautioned the drugs could be placebo or “empty” pills, or in a worst case scenario be actively dangerous."

Fact:

The published and peer-reviewed results of the REDEMPTION trials show that generics work just as well as the branded products. hepcasia.com/wp-content/uploads/2015/03/...er_International.pdf

As far as I can remember, there have been no cases reported on FixHepC of people buying placebo or fake medication through any of the listed FixHepC supply sources.

Crap:

"In addition, while doctors are able to monitor patients’ health during normal prescriptions, they cannot monitor patients who order pills in this way to the same extent, prompting concerns that they are vulnerable if an adverse reaction occurs."

Fact:

Doctors can order any form of monitoring they choose or they can refer to a specialist if it is beyond their capability. However, for various reasons which seem morally indefensible, it has been reported on FixHepC that some doctors are afraid to prescribe generics and some refuse to monitor patients who have been prescribed generics by another doctor.


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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5 years 10 months ago #21485

You are right Vororo, to put the name "Independent" in inverted commas. I am alays rather suspicious of any private enterprise calling themselves 'Independent'. That paper has a few good reporters, but at the latest GE came out last minute for ones chums in the Gvt. I'm not against private companies making money, but at the expense of the healthcare of the people and reaping financial rewards at the expense of sick people, is quite another.

Their report above is for the few, not the many, but sadly doesn't surprise me.


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
Last Edit: 5 years 10 months ago by LondonGirl.
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5 years 10 months ago #21495

This article is full of crap

Scaring pple not to get generics

Even my doc says, she won't earn a cent from medicine, and if i want to source on my own she can still monitor me

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5 years 10 months ago #21527

Ha ha, so I commented on this topic before :cheer: (the thread was closed) The British Pharmaceutical association pushes the agenda of it's members (Gilead, etc.) So I guess the fear mongering is to be expected. They want patients to get sick and wait, so they get their big salaries.

Bottom line is big pharma is a business out to maximize profits for big pharma, like any other business. The patient is left to either deal with the system, or take a chance and source their own medication.

There are bootleg versions of Twinvir, etc. being produced, so in one right these concerns are valid. But there are of course many venues to get the genuine generics (through REDEMPTION or Pharma's market)

Patients need to be smart and deal with legitimate sources to cure themselves. I can give anyone interested a contact for genuine Twinvir (Harvoni generic) that cured me. Less than $1000 USD delivered to your door in USA and many other countries

My profit 0$ Your cure: Priceless

I'm here for the Karma.


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
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 5 years 10 months ago by Greedfighter.
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5 years 10 months ago #21549

Dear LG, thankyou for your supportive posts. #flower It was with sadness that I read that you were refused a VL test. Unbelievable! :evil: I do and I don't know why it has to be so difficult. Hoping to read that you have received a continued and clear UND from you in the near future. X


gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
Last Edit: 5 years 10 months ago by pat1.
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5 years 10 months ago #21562

pat1 wrote:

Dear LG, thankyou for your supportive posts. #flower It was with sadness that I read that you were refused a VL test. Unbelievable! :evil: I do and I don't know why it has to be so difficult. Hoping to read that you have received a continued and clear UND from you in the near future. X

hear hear I second this emotion. Well said Pat1 :+1: In terms of a so called 'easy' tx compared to the old stuff, LG you have had the most hotch potched non support it is sad and bad and makes me mad. Considering that you have extended, had two combos and still are getting messed around I am so glad you honestly blog the ridiculous goings on in the UK so others can be armed for the ride. Although your story isn't all sugar coated with daisies blooming and unicorns and rainbows :silly: it is REAL, and so important people are aware of what they are facing in your part of the globe. I also wish you UND, SVR and your health. We started out together, and I will be here when you cross the finish line my Northern hemisphere buddy.
Sending you happy splashes from Ariel #flower

*edit: "armed for the ride" ***with monkmed/GP2u
I'm responding here to issues with NHS experiences LG had has to overcome


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: 5 years 10 months ago by Ariel.
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  • rohcvfighter
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  • Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
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5 years 10 months ago #21584

To me it looks like the article is written for Big Pharma's interests.

The general sounding of the article, starting with the title, presents the NHS (low) budget as being the bottleneck in treating HCV patients, so the indirect message is to increase the funds in order to treat more people. But this is nothing else as just continuing to do what the healthcare systems did for years in the past (increase of budgets while Pharma is asking for more money).

The author of the article as well as politicians and people working in the healthcare systems should think on a new paradigm regarding the access to treatment. (as Sofosbuvir was in the treatment of HCV :idea: - so do not waste money, rather invest it in an intelligent solution to treat more people).
It is a lack of ingenuity, creativity and perhaps intelligence (I do not intend to offend nobody, rather to pinpoint an idea) to play the song of "generics might be fake or whatever". People need solutions, so instead of the budget song, the message should have been: "what should we do in order to allow patients access the real, effective and cheap generic HCV drugs". Finding a proper solution for this would mean creativity & intelligence. We may argue that a Buyer's Club is an imperfect, yet pragmatic way to access HCV generic drugs. So, why aren't politicians looking at the fact the people do get cured with these generics and why aren't they doing something to provide these generics on a larger scale, perhaps in a regulated manner and thus to offer the assurance and safety that the "good" generics will be provided to the patients?

Some time ago a key question was whether generic HCV drugs are effective. Now we know they are. And we also know that the treatment if delayed because of some laws. Which leads to another question: what has a higher value? The life of a person or the "blindness" of a law? I think we may agree that the current bottleneck is on a political level.

Cheers,
RHF


In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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5 years 10 months ago #21628

Thank-you Pat & Ariel,

To be fair, my GP has been wonderful this far. It is all about cost and lack of money, as my post above. The NHS are refusing anything at all deemed ''unnecessary' :angry: and GP services are also struggling. When I lost hospital monitoring mid tx, he stood by me, but as soon as some awesome 'powers that be' stepped in to help me get monitored at local hospital 3/4 of the way through a 26 week tx, he decided to save money and let the hospital take the cost I guess, trouble is, they only offer VL test 12 weeks post tx :(

I feel so bad for another UK patient I know of, NHS offered him only 12 weeks and he has cirrhosis, I advised him that he may need a longer tx and to seek medical advise here, but like so many here of a certain age, who have been brought up trusting the NHS , he decided to ignore me & trust his very prominent hospital. At 12 weeks tx, he was still detected & they told him all would be fine (NHS policy based on what they can offer based on finance) and he believed them. He has now relapsed, heart-breaking.
It seems to me, Many English people seem to have trouble thinking outside the box.

btw I took 3 combos, but I'll continue on my own blog when I have any news my lovelies.
Meanwhile, I feel the #love #flower #flower
Really, I don't know how I would have coped emotionally without you guys, MonkMed & Dr F, so here's some big #love right back at acha all .
LG


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
Last Edit: 5 years 10 months ago by LondonGirl.
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