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Post Info TOPIC: Future of hep C services and patient care at risk in UK due to NHS reforms..new report


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RE: Future of hep C services and patient care at risk in UK due to NHS reforms..new report
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like in Malcolm's case, majority of people here got HCV during war (92-95) from blood transfusions and unsterilised equipment (my good mate who was a medic, said in hospitals it's blood everywhere from injured, he was covered in blood all the time), post war as i can see on the clinic seems it's mostly ex-heroin users, but i head stories of very recent infections @ operations. Friend's mom got it 3-4 years ago while on operation (hernia).

I met some people in Croatia that got infected by their dentist, which most likely is my case too. I don't have statistics for Bosnia, but according to some statistics (unverified) it's round 40.000 cases (thats roughly 1% of population). There was a campaign about hcv awareness since 1-2 years ago, it's still on i think. All the doors of GP offices were covered in posters with symptoms, "strangely" i had all of those mentioned (pain below right rib, enzymes elevated, joints pain, fatigue)...good thing that since 3-4 years ago, state health insurance covered antihcv drugs (peg n riba) for patients, until then people were getting bank loans just to afford Peg/Riba.

it's strange how it's percepted around hcv over here. Some folks (even hepa docs!) consider it nonlife thereatening disease which can be controlled by diet, most of common folks usually mistake it with hepatitis b and that it can be transmited body fluid. Some stigmatise you like you are junkie user straight away (some docs too!).

i am really lucky i have found decent hepa that takes care of me






__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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The Netherlands is one of the few countries that keeps a good statstic of infection rates, treatments as well as dividing mono infection and co-infected and outcomes. Over here they have needle programs, drug testing (for users, to ensure they are not going to kill themselves) so I assume they also give to the "high risk" categories plenty of information regarding diseases and prevention. I had heard of Hep C, knew it existed but really past knowing it was blood bourne knew nothing about it. My husband really didn't know what it was, and he assumed I would get a perscription and a week later cured. People know about Hep A and B because there is a vaccine, but Hep C well, we all know it is proving impossible to make.

I did read the other day, that once infected by Hep C, even after acquiring SVR that we are all at higher risk of contracting other genotypes so have to be vigilant (easier to catch for us).

I think part of the problem is some of the spoke persons for HEP C such as Pamala Anderson are seen falling out of clubs, it gives the wrong image to what really people go through. Also she appears to the outside world to not be bothered to treat, (although I am sure in reality she is waiting for the newer medications like a lot of people.) But public perception is, a high risk life style, and dating "junkies." Another high profile person is Steven Tyler, wild rock star, and reformed user etc. This is what the public read and form an opinion on.

I dont see any awareness over here, and infact only since I have it myself, I am hearing of other people that had a family member, or know someone that has had it. It seems it is rather tabboo like H.I.V was in the beginning.

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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Thanks for your interesting comments, Lisa and Malcolm.  Funding is certainly a big issue over here with the cuts to public spending that the government has brought in as part of their austerity measures.  Very short-sighted where progressive diseases like Hep C are concerned and the current treatment policies can only be storing up more problems for the future.   On the other hand, you`re right, Malcolm, at least the new DAA drugs are officially available over here now, even though not everyone who needs them is actually able to get them.

Stigma is a problem over here but also sheer lack of awareness.  I well remember the massive HIV publicity campaigns of the `80`s, and nowadays most people have at least some knowledge of what it is and how it is contracted.  With HCV it`s a very different situation and I think it would take a campaign on that sort of scale to educate and make people aware of the need to be tested, as well as a big change in funding policy.   I only wish I could feel more optimistic about it.



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi Jill,

I always blink when I see the estimated number of HCV cases in the UK.  For a population af about 66 million, 216,000 cases is an incidence of only 0.3%!  Australia has more cases than that, and UK has the added problem of migrants from countries where the incidence is between 2-4%.  I'm sure the figures are wrong, and probably deliberately grossly underestimated.   France has an incidence of 1%, USA has 1.8% and Australia is 1.2%. Obviously these figures are not exact, and various reports give some variation. Anyway, that's not the subject of your post.

Up to 2 years ago, HepC was not considered curable in the true sense, as less than 40% of patients cleared the virus with the available treatment. Times are changing, and with the new DAA's, up to 90% of patients should clear the virus. Remember these drugs will not be available for most of the world for at least 10 years, if ever.

In the developed world, it is estimated that only 25% of patients with HCV have been tested, and of these only 5% have been treated.  In the rest of the world most cases of HCV haven't been tested, let alone treated. This vast reservoir of HCV patients will remain, and with immigration, will always spread back to countries like Europe and USA. Patients with SVR should be cautioned about going back to any old, risky habits.

In the UK, the stigma of HCV is responsible for much of the problem. As long as it is seen as a drug-users disease, there is no political pressure to attack it. Serve them right is the attitude.  It needs a massive campaign to encourage testing and education about treatment. Then there is the problem of finding the money to pay for the new, expensive drugs.  No government will do this as there is no public pressure and the Medical profession is sitting on it's hands. This didn't happen with HIV- Medical and public pressure forced governments to spend the money.  The costs of transplants and expensive treatment of cirrhosis is dismissed, as they will occur some time in the future.  Perhaps the European countries have more liberal, enlightened government members and the UK was always pretty staid.   The situation in Australia is just as bad.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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No problem, it seems that because Hep C is considered "curable" it has become an epidemic amount of people infected and no one testing, let alone treating. I read yesterday that 34 million are infected with H.I.V which is a alot, but when you compare against the statistic infected with Hep C, estimated 170-200 million, it shows something needs to be done! It is heart rendering that so many people are dying because it is a silent disease, silent from testing, silent for treatment options, and silent for awareness!



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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Those are scary statistics!



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



Guru

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They certainly are quite shocking, Lisa.  I really feel for all the people who are waiting for tx, makes me feel thankful that mine was successful.  It`s time this country got its act together instead of lagging behind.  Thanks for reading...smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Future of hepatitis C services and patient care at risk due to changing NHS

New report suggests innovative service design could help change current state of hepatitis in the UK

A new report, supported by leading hepatitis C patient groups, highlights the poor state of UK hepatitis C services compared to Europe and provides practical steps to service innovation to help reduce the burden of the disease. The `Confronting the silent epidemic: a critical review of hepatitis C management in the UK` report, as part of the wider `Hepatitis Awareness Leading Outcomes`, initiative comes at a crucial time when research shows not only declining treatment rates, but also significant concerns over the impact the NHS reforms could have on hepatitis treatment services.

Full article...

http://www.hepctrust.org.uk/News_Resources/news/2013/May/Future+of+hepatitis+C+services+and+patient+care+at+risk+due+to+changing+NHS



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 

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