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Offering real hope for people with hepatitis C
Peter Huskinson, and Professor Graham Foster, set out ongoing work to improve treatment for patients with chronic hepatitis C:
NHS England announced last summer the single biggest new multi-million-pound treatment investment of the year by the NHS would be in hepatitis C.
The new treatments this funding allowed us to roll out offers real hope for patients. In many cases they can effectively be cured of the virus, and the drugs are much easier to take than older treatments.
Importantly, the funding also enabled us to set up 22 Operational Delivery Networks to help deliver equitable access to these treatments across the country, identifying and addressing regional variation in the number of quality of services.
These networks, or ODNs, comprise specialist centres working in partnership with other local care services and professionals, and have been allowing clinicians to ensure that those with the greatest need – up to now, those with cirrhosis – get speedy access to treatment.
And now they will be instrumental in helping NHS England meet the significant challenge of rolling out the new oral treatments for chronic hepatitis C approved by NICE at the end of last year.
The NHS has already treated the majority of people with cirrhosis of the liver caused by chronic hepatitis C – nearly 5,000 individuals in total.
Now we are committed to doubling the number of treatments to 10,000 patients in 2016-17.
This is a remarkable, life-changing advance in care for the NHS in a short space of time, and is testament to the clinical leadership and partnership between healthcare providers that has been established so quickly.
But it is also clear that this promising advance in medicine presents a real budgetary challenge to the NHS due to the numbers of potential patients and the very high aggregate cost of the treatments involved.
Our priority as stewards of this programme – working with the ODNs and clinicians across the country – is therefore to ensure that every penny invested in this area achieves the most health benefit possible.
Whilst NHS England has made the tough prioritisation choices necessary to free up funds to invest significantly in new treatments, and will continue to do so, pharmaceutical companies also need to play their part; quite simply, making faster progress for patients in eliminating this disease will depend on pharmaceutical companies making them more affordable.
We are already seeing promising signs, although there is much more to do, and we hope all companies will follow the example of those who have been the first to improve their prices.
But, of course, people living with chronic hepatitis C will be more concerned with how soon they will be able to access the new oral treatments.
It’s clearly not possible for everyone to be treated immediately; notwithstanding the very high cost of the treatments, there are clinical and logistical limits on how quickly patients can be assessed, monitored and treated.
That’s why NICE recognised in its latest guidance that to treat all patients with chronic hepatitis C is going to take several years, and that decisions on which patients should be the first to access these new drugs should be taken by clinicians, working together as part of ODNs.
We would therefore encourage people living with chronic hepatitis C who want to find out more to speak to their clinician – all those working within ODNs have been issued with guidance and should be able to answer any questions.
We look forward to keeping you updated on the key milestones and developments in this important treatment programme over the coming months and years, and please do let us have your comments and feedback.
My chances of cirrhosis are million times worse I have investigated fully my blood disorder factor v leiden makes liver fibrosis progress a million times faster in chronic hepatitis c my liver stiffness fibroscan was 10.6 its cirrhosis when 12.2 and I’m still without treatment please help
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I admire and respect professor Graham Foster. He has always given me hope and strength to carry on living with hepC
i think i may have been given tainted blood in 1977 as i have had nothing but health problems since,resulting in several nde i have several auto immune diseases and unknown to me until now i also have a fatty liver and am pre disposed the clotting having several pulmenary embolisms
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I am a 21-year old student, diagnosed with Hep C (genotype 1b) back in 2008. I think I contacted the virus from unsterilised medical equipment (dentist) when I was around 4 years old.
In 2009, I was treated with interferon for 9 months with no results – thinking about it now, it was harsh for a 13-14-year old kid, but I would go through all of it again, only if I knew it would cure me once and for all.
I’ve been living with symptoms for virtually my entire life – at least what I remember. I don’t really know what being ‘healthy’ feels like. I got used to constantly feeling fatigued, being told “you look pale/yellow”, and to the periodic bacterial/fungal infections that a healthy person should be able to clear.
‘It’s my skin shade, don’t worry!’… I almost believe it.
I hope to gain access to this new treatment as soon as possible, before it gets ‘bad enough’ and before I ‘need it’. All I wish is to get the chance to live like a normal young adult.
I don’t think this is good enough. Australia is treating all cases of hep c with DAA’s immediately. Is Australia so much richer than the UK?
Not enough people know about Fixhepc, an Australian organisation run by Dr James Freeman which acts as an agency to allow sufferers to access the new DAA’s in generic form from India at a cost of about £1000 for a 3 month course of treatment.
I contracted hep c through heroin use. Diagnosed in2001 i’ve since had 2 rounds of treatment in 2011. Unfortunatly it didnt work for me even though i’m classed as a carrier it could activate at any time. I’m waiting for a cure that is available unless you dont have funds.
I have genotypes 3 Hepatitis C I do not know when and where caught, I’m a very healthy lifestyle, I was offered treatment of old medicines on which many side effects terrible depression state, I said I do not want 6 months to be in such a state, I asked for a new medicine to which the government has allocated money, I want to know when I can get treatment for 12 weeks, the best medicine and if I could pay for a treatment to speed up the process?
I am one of the hep ‘c’ sufferers from nhs blood transfusions in 1970 is 46 years. I was diagnosed 3 years ago. I have lived my life I suffered the symptoms of the ailment never knowing that I was ill and because I never knew what it is like to feel well, I thought how I have felt all my life was normal.
I am on a waiting list for treatment but when I will be treated is in an accountants hands without any address to anyone.
I am hoping that contaminated blood transfusion victims will be treated as a separate group so we can enjoy at least for the a part of our lives, however long or short it may be.
I am one of those hopeful chronic Hepatitis C sufferers waiting for treatment. I might have been infected in 1949 or in 2005 during operations but it was not diagnosed until October 2014. I have been keeping up to date with developments and my consultant in Canterbury told me in February 2016 that no one in Kent has been treated so far with the new DAA drugs. I am very concerned that I might infect people with the virus, my husband is undergoing tests at the moment, he has mopped up my blood on several occasions in the past. It seems very shortsighted to me that only those with serious cirrhosis are being treated and I have to wait until I become seriously ill. The damage to the liver by the virus is irreversible as I understand it. My Fibroscan reading was 8.2 kPa which is not serious enough for me to be treated according to my consultant in Canterbury. Everything is set up to deliver treatment but he has to wait for the word from King’s College Hospital which is the hub. I have been even thinking of going to India where the government has put a cap on the drug price and generic Harvoni is available even cheaper than Rs7,000 for the course of 28 tablets.
it is not as hepatitis C patients needed life time treatment. In my case (Genotype 1b) 8 weeks of treatment would cure me. Could you please hurry up and authorise my treatment?
I am a victim of a NHS blood transfusion – 1977.
I have been suffering with serious symptoms for 30 years and am now informed
that it might take years for me to receive treatment because I have not yet developed cirrhosis. The impact the symptoms are having on the quality of my live is ignored.
I was hoping that the victims of the contaminated blood products would get
treated as a separate group and not have to step aside to give priority to patients who often got ill through life style choices!
If by ‘lifestyle choices’ you are referring to those with drug problems you should know that most people were not aware of Hep C until the early 1990’s so would not have known they were at risk. It is bad that this rationing of treatment is setting groups of patients against each other. I have worked with drug users and they are the best informed most careful group now as they are aware of the risks and take precautions. The majority of new patients are baby boomers born between 45 and 65 who contracted Hep C from the NHS before new hygiene protocols were introduced. So it was dental treatment, surgery and other scenarios that caused the majority of cases that are now in their 50’s and 60’s and have symptoms of the disease. It is the biggest tragedy the NHS has ever seen and it suits them well to see patients blame each other so they avoid responsibility and people think of it as only a drug users disease when it clearly isn’t. There needs to be a proper enquiry into how so many have contracted the disease from the NHS, an organistaion which now won’t even treat them.
“So it was dental treatment, surgery and other scenarios that caused the majority of cases that are now in their 50’s and 60’s and have symptoms of the disease.” Thank you for stating the uncomfortable truth.
susannah, very well put. The only reason NHS England has felt able to put a cap on the number of patients a hospital can treat each months is because the public believes this illness was “contracted through lifestyle choices”. Had it been any other illness, it would be all over the papers and everybody would be outraged.
If this is the case, that more people are to be treated, why is it that the numbers have been reduced in the South West, including Bristol, Bath, Gloucester and other areas, to a total of only 24 new patients a month, and at least through June?