Updated news: 

Unfortunately, the Hep C Trust has been refused permission by the court to pursue a judicial revue of NHS England`s decision to ration access to the new DAA drug treatments. 

This is very disappointing news and we can only hope that the situation changes for the better in due course. 

Here`s the full article... Hep C Trust Ends its Legal Challenge

Incredible isn't it. I had the same thing waiting for ages. But we have only 33,000 infected here. I don't know statistics in the UK? But either way, it will cost a lot more in the future if this disease spreads....go figure!

Thanks Mike, helpful as always... 

Great effort to contribute to, even for us in the USA. If you are in the USA and wish to donate do so via changing the default currency, British Pound to US Dollars (as shown below).

Thanks Dave. Yes I read about that.  It`s very good news and let`s hope it does represents a turnaround in thinking and attitudes towards the importance of Hep C treatment for everyone who needs it.  The fight to access essential medical treatment shouldn`t have to end up in the courts, in any country, but if it produces results then it has to be done.

I`ll be following the situation with the Hep C Trust and will post any updates, and I also wish them the best of luck with their campaign. 

Thanks! 

I hope the courts see how unfair the NHS England's new cap on these particular drugs is.

Wishing England and the Hep C Trust and of course all those waiting for treatment the very best going forward.

At least in taking this to the courts the NHS England's hand is challenged and hopefully some semblance of fairness will prevail.

I know the situation is quite different where I live in Washington state US, but 5 days ago A federal judge has ordered Washington states Medicaid provider to cover expensive hepatitis C drugs for all patients with the liver-destroying disease, not just those who are sickest.

I state this because it appears to be the way this is trending (we are hoping a presidence has been established which will carry on to providers other than just Medicaid). Once in the hands of the courts there may be the chance that budget constraints are not the only thing considered. So there is hope (and yes, different country, different courts but nonetheless I believe there is a trend and we wish you all the best with this).

Dave

Yes, very disappointing, Pablo, and also very short term thinking.  We know that the NHS is under huge budgetary pressure, but the more people who are living with Hep c in the general population, the more it`s going to continue to spread, while the waiting lists for treatment get longer and longer, and people are getting sicker.

The NHS does negotiate discount prices for drugs, but even so the Big Pharma companies set the cost of the new DAA meds way too high, I agree.  Lets hope the situation will eventually improve with lower costs and shorter Tx durations enabling many more people to be treated with the drugs they should be entitled to. 

You made a good decision opting for the trial!  Nearly over now too! 

Hi Tig, thanks for your supportive comments! 

Hi Jill

I've been following this too, and I've found the Hep C Trust supportive over the years.

I was following the NICE HCV guidelines very, very closely...to the extent that I got offered treatment on the very first day they were announced (1st March) because I'd been chasing my hep team so much.  In fact, I got offered both a trial and NHS treatment at the same time.

I went with the trial.  Part of my reasoning was that if it didn't work I would have the fall back of NHS treatment.  So it's super-disappointing that NHS England have stepped in and placed a monthly cap on DAA treatments each hospital can provide.

It's simple economics I suppose: the NHS can't afford to treat everyone with HCV in the UK.  This is one of the reasons pharma companies have been pushing through triple therapies for shorter treatment lengths.  But it's backwards thinking on one level: save x amount of money by shortening treatment by 4 weeks but add on y amount of money for the cost of the additional drugs...

...what healthcare systems, support groups and governments need to be doing is canvasing the big pharmas to lower the costs of DAAs.

Pablo

Excellent article, Jill. I think this is a great article to share here on the forum. We have a wide reach around the globe and into the mailboxes of HCV advocates everywhere. This is the kind of advocacy we can be a part of and encourage others to share. It's vital that we help organizations like the Hep C Trust get their position out and support them any way we can. I ask everyone to take a moment and read the article.

 I`m posting this as it`s such an important issue for anyone in England who is currently waiting for treatment with the new DAA medicines. The Hep C Trust is a well respected charity and advocate for HCV, and they are asking for support to fight NHS England`s decision through the courts...

The Hepatitis C Trust wrote to NHS England to ask it to reconsider its decision to limit the number of people with hepatitis C who are allowed access to new NICE approved drugs that cure the disease.  On Monday 16th May, 2016 NHS England replied with a response that The Hepatitis C Trust did not find satisfactory.  With great regret it now has to consider seeking a judicial review of the decision.

Last year NICE approved a series of new drugs for the treatment of hepatitis C through its technology appraisal process.  These drugs cure the disease in around 90% of those who take them.

Yet in March 2016 NHS England imposed a cap on the number of people that hospital trusts are allowed to treat each month with these drugs and introduced financial penalties for those which exceed the cap.  This is the first time NHS England have imposed a cap on drugs that NICE have said are cost effective and must be made available.

It is truly ironic that NHS England should chose to start rationing drugs that are so effective they cure almost everyone who is treated, said Charles Gore, Chief Executive of The Hepatitis C Trust. It feels like people with hepatitis C are being picked on.  We are having to look to the courts to protect them.

NHS England`s approach is in marked contrast to that of many other countries, like Australia, Germany and Scotland, that see the introduction of these new drugs as an opportunity to treat as many as possible and eliminate hepatitis C in their countries.  In addition to being much more effective, the new drugs are much more tolerable than previous regimes.

People have been waiting years for these drugs because they felt what was on offer before was too toxic, said Samantha May,  The Hepatitis C Trusts Support Services Manager.  Now suddenly to be told they may have to wait months, even years more is really distressing.  Our helpline is overwhelmed with people who cannot understand why NICE says they can be treated now but their hospitals are sending them away and telling them theyll get a letter at some point in the future.

Link to full article..

http://www.hepctrust.org.uk/news/may-2016/hepatitis-c-trust-considering-seeking-judicial-review-nhs-england%E2%80%99s-decision-ration