Thousands more patients to be cured of hepatitis C
This article has been amended to better reflect the policy document.
NHS England agrees funding for new drug treatments for Hep C
In what will be the NHS’ single largest investment in new treatments this year, NHS England has today (11 June 2015) announced the budget will be increased to £190 million for new virological cures for hepatitis C, from the approximately £40 million which began last year.
Thousands of patients in England with cirrhosis caused by the hepatitis C virus will now be able to access new treatment options to prevent further damage to the liver, including the potential of end stage liver disease or cancer. The hepatitis C virus affects the liver’s ability to function and is most commonly a result of the use of infected needles by intravenous drug users.
Richard Jeavons, NHS England’s Director of Specialised Services, said: “At a time when funding is inevitably constrained across the NHS this is a huge new investment; in fact it’ll be the NHS’ single largest new treatment expansion this year. That’s why we’re also running a competitive tendering process in parallel, to seek to bring down the price of these very expensive new drugs.”
Peter Moss, a Consultant and Chair of NHS England’s Infectious Diseases Clinical Reference Group, said: “The new anti-viral drugs being made available through this scheme offer a huge improvement in care for patients with hepatitis C-related liver cirrhosis”.
Charles Gore, Chief Executive of the Hepatitis C Trust, said: “Patients with cirrhosis will be delighted to have access to these new drugs. They are so tolerable that almost all of those with cirrhosis will want to take them and so potent that almost of those that do will be cured of their hepatitis C thereby massively reducing their risk of liver failure or liver cancer.
“This is a big step forward towards reversing the rising death-toll from this disease. People living with hepatitis C have been waiting for this revolution in therapy with huge expectation and now it has arrived we hope NHS England will move quickly to make it available to a rapidly increasing number of patients.”
47 comments
I still,have HCV genotype 1b with compensate cirrhosis contract in 1977 through contaminated blood transfusion. I have not idea when I will be treated..spent most of 2015 living in limbo as a result. Now NICE has published final guidelines for treatment, I still have not heard from anyone regarding my treatment. My liver specialist nurse, whom I call and email, ..who is working hard…can only say I am on the list and I may get treatment for my HCV early next year. Where is the transparency…increased staffing to roll out our treatment…I know the best care for me is to be treated for my HCV as soon as possible, as my quality of life is declining due to increased symptoms as I age. This patient and all others like me need care before we develop end stage liver disease, or liver cancer and need care by NHS for the rest of our lives. So, why am I waiting to be treated?
My postcode is BN6 9DY
I have been suffering with hrp c genotype 3for the last 30 plus years. I was told that my life expectation will be shorter then expected just when I believed to have found happiness again. My sister who also suffered of hep c with delta died after a period of pain and agony. At the end she suffered from terminal COPD and was diagnosed to last 3 months or so. It was a nightmare. Now it is my turn. my recent fibro scan discovered that I reached stage 6 of 6 of fibrotic tissue meaning that after that who knows what happens. pain? So far I fight what ever pain I have. Yes it pains especially when I worry or eat too much or use nicotine gums to help with smoking cravings. I did stop smoking for some years now but I still from time to time get some cravings. After all I don’t drink never did or will, and my life is fully dedicated towards my family who has supported me in the long battle to survive. But I can’t stop having pain or being so tired and depressed that I developed in to a little scared mouse despite being a strong tall and not bad looking chap. I try to hide my situation but now that pain has started I am tremendously scared to die. I am only 52 and I never hurt anyone to deserve such punishment. How I got hep c God knows. I presume I was infected early years of my life when I was in Africa Ghana because of my father diplomatic activities. In fact according to the records I was a victim of a car accident and on delivery to Accra main hospital I was given most likely infected plasma. But we will never be able to proof it. During my life I got to learn my diagnosis but preferred NOT knowing the truth initially in fear of bed news and personal ignorance and fear. Unfortunately after developing also Hep B it became impossible not to ignore my dual infections as doctors and consultant became less and less optimistic of my situation. So I was started on an interferon program which failed tremendously as my condition resulting in being a none responder. After that I began to accept the idea of death. It was to me inevitable that I will ever be able to fight my condition, especially because I never trusted the NHS ability to help me as everyone spoke about the costs related to cure someone who is already over the age to work ever again. I was told that these treatment program were designed ONLY for those younger people who had a life time in front of them. This was confirmed to me when my sister who was only 44 was denied a vital regenerating drug which would have helped her to extend her life expectation by months (better then nothing ) simply based on age, diagnosis and life expectation in relation to the costs. To comment on such decisions is a waist of my time and energy. Fact is that I feel up to now that the NHS did not help my sister but simply ignored her and left her to die as they do with so many other p[people whose treatment are simply to expensive according to them. There is a price on people life that is the bitter fact.But I don’t want to make politics, not now. All I wish to know is if this new treatment will help people with dual diagnose stage 6 fibrosis and if at all what are the chance of a total recovery or if I have a chance at all of receiving a liver transplant or to be part of some trial involving new treatment programs. Anything will do it as long I can live longer. I cannot accept defeat at my age and to leave my family. I am simply not ready and I am so terrified of it that I cannot share my depression with anyone. I cant explain how I feel, words cannot describe my feelings and my call for help. I know many more deserve help much more then me, but all I am thinking about is having to leave behind people who need me whom my help is essential to them. And my mother who will have lost both kids over such tremendous disease? what a disaster will that be for her? This is very unfair and I hope anyone who reads this and is able to afford to help will help so that we can also access the treatment money only can buy. I just red about Pamela Anderson claiming success to have been cured of hep c. lucky her, and as she describes simply because of her money independency was able to obtain the latest drug, something we in the UK have to wait and wait, until we all die. This cannot be right and is not fair..I already lost a sister and despite I miss her I still want to live and see my child grow up, be her pillar her daddy and not just a remote memory. The idea that people will suffer over me kills me. This is why I MUST WIN THIS VIRUS< I MUST SURVIVE. why me then? why not everyone? While people sits on billions to spend and enjoy we sit on a mountain of uncertain words and plenty of worries, pain and depression with one only wish, to live, survive. I don't know to date what cure is out there to help. All I do know is that I have now received new blood results which shows elevated value for the big C word. Can that also be a new one to come? Oh dear Lord, not that please!! So my doctor is now requesting a CT scan to identify what's wrong. And in terms of treatment we will see whats now available and if the NHS truly pays for that. Because if not all I have to do is wait for the zero date to reach me earlier then wanted. I am really unhappy for an unwanted illness. I have lived a life of fighting to survive. Now I live hoping not to give up my self. No matter if I am broke with nothing left because I still have those who give me hope and still believe in me. I must do it for them if not for me. I must fight for them..I just hope there are new accessible cures out there for complicated treatments as mine. I may represent a minority but if possible why can't I then access a liver transplant in the states if there is a chance? I don't have the funds and I am possibly to old already. But then what expectations does anyone have? hope? I cant loose that also. Please let me know what you know about new treatments…thank you all for giving me the opportunity to sharing my feelings with you about an illness which changes people thinking and way of life and believes. God bless us all, with lots of more life and health and when you call us in your reign please do not let our family and friends suffer but enlighten them with all your glory and love and let them be known that we are all well in a better place loved and guarded by you with no pain but eternal love Amen.
I was diagnosed with hep c 1a in 2012 and can only think I contracted this from my ex husband who was an iv drug user in the late 60s early 70s. I remember contracting infectious hepatitis in 1969 but thought nothing of it. I have never taken drugs so don’t know how I contracted it. I have had this disease for around 45 years. My fibroscan reading in 2012 was 9 kpa and fibrosis. . in 2013 I had treatment with interferon ribavarin and boceptivr which I coped with for 10 weeks but due to ending up in hospital 5 times with panic attacks, heart problems and losing 1 and half stone in weight I was advised by my specialist to stop treatment. 2014 my fibroscan reading was 6.2. I have another fibroscan booked for next month. In the meantime the quality of my life is zilch. I am tired and exhausted 24/7. I can’t seem to do much at all. Depressed. In a lot of liver pain. I have gone from a fun loving person who cannot be bothered with anything or anyone through no fault of my own. I have recently been told by my specialist that at a recent meeting she was told of somebody who has had the treatment and keeps getting re infected and has had more treatment. How fair is that. I need the treatment.
It is very commendable for the NHS to increase its funding and offering to treat chronic Hepatitis C sufferers with cirrhosis, but this does not halt the spread of this disease. It makes financial sense to treat ALL chronic Hepatitis C infected individuals because the treatment time for those with fibrosis is half the time for those with cirrhosis. 12 weeks compared to 28 weeks.
What is the reasoning that makes those with fibrosis wait for treatment until they have developed irreversible cirrhosis?
I have had hep c geno type 1a for 18 years or more and found out just after i gave birth because the nurse had a needle stick injury, my daughter was not infected. Luckily at age 4 she was negative.
I was working full time until April this year and I felt awful so I reduced my hours but after another year i found I could not cope any longer, I was exhausted, all joints aching and my upper and lower back pain was unbearable. I am currently having hydro therapy treatment for my back.
My Liver specialist took bloods from me two weeks ago and i have another scan for my liver on 9th Oct 15 but my specialist told me that despite the fact I have never had treatment and I am unable to work, i will not be able to receive treatment with the new drugs unless my liver stiffness test is 11.5 or above!!!
I cant believe this! I just want to return to work and be cured from this disease and yet I do not know how much longer i am going to have to wait to receive this treatment that I have been waiting for, for 18 years.
I am a 43 year old mother of a 14 year old daughter and want to be around to see her marry and have children, but I worry that unless I get treatment soon i am going to miss out on all of this.
Can I appeal the decision if the liver specialist tells me “No”? I desperately need Harvoni. I just want to feel normal again.
Thanks for your time
sherrel
I am in the same boat as you except that I have had this disease for maybe 45 years. I am 1a. My fibroscan reading last friday was 9.3 fibrosis. How long do I have to wait for treatment. There are people that are having treatment and then they are getting re-infected because they are injecting etc.
I have already written something before.
Please tell me why I have not been treated yet?
I have HCV genotype 1b treatment naive cirrhosis 11.5 last fibroscan. When can I start my treatment on Harvoni before my symptoms worsen and my liver becomes decompensated?
So, I have lived with this disease every since I had a blood transfusion in 1977. Fibroscan has gone from 8.2 to 11.5 in less than 18 months. This worries me and my family.
Too much protocol not enough treating the actual patients?I feel the NHS needs to treat more patients much more quickly.£190million went where?
This is a cure, so I am excited but frustrated waiting out the year of 2015 not knowing when I will be treated with new drugs such as Harvoni. 90 tablets vs Abbie Vie Pak 560 Tabs in 3 months.
If the NHS wait too long they will be treating yet another HCV patient for the rest of their life for liver disease.[HCC and/or liver transplant]..and that is not cost effective.
So one year of my life, my retirement years, slides by, and my immune system reduces as HCV claims a little more of my health/well-being.
I await the cure for my HCV…it is September now..I am left.waiting…I am in a bad place. My family is sad their mother, wife, sister, sister in law, aunt , mother in law has to wait for a life saving cure/treatment. Only those at death’s door get treatment for now.
I also have hep c genotype 1a but in Plymouth heptology dept are only treating people who have 11.5 or above on the fibroscan, so you would qualify in this part of the uk.
I have my fibroscan on Oct 9th but I am still not holding out much hope, I just wanna get back to work but I am too ill to work at the moment.
Ask your specialist why are they treating different levels in one part of the country to the next, does not seem fair to me.
Good luck Sherrel
Hi Janis,
Thank you for taking the time to share your experiences of living with Hepatitis C. Unfortunately we cannot comment on individual cases on a public blog, and would suggest you discuss treatment options with your clinician.
NHS England remains committed to making the new anti-viral treatments for Hepatitis C that have been approved by NICE available for patients. We have already established networks comprising specialist centres working in partnership with other local care services and professionals to deliver equitable access to Hepatitis C treatments across the country, while allowing clinicians to prioritise treatment for those with the greatest need.
Kind Regards
NHS England
I was reading an article yesterday that was explaining that Havoni medication costs 1 dollar per pill to make. Is this then not illegal to price a cure for so many peoples lives that makes it in accessibly to them? I understand that NHS England can’t afford to treats everyone who has hep c but I think central government should pass a law to make this kind of greed illegal. I myself cannot wait for treatment on the NHS anymore after my appeal for Havoni was rejected I will now purchase my medication from fixhepc.com which is a legal way to import Harvoni from China ( where the drug is sold at a considerable less cost). The company owned by an Australian GP tests the medication to make sure it is what it says. It is legal to purchase a drug from another country if it is for personal use. I am talking no more than up to 3 thousand dollars to do this. Why doesn’t the NHS find a loop hole like this if I can do it ?
Rebecca
It is great news that new treatments have some funding. Trouble is that there are 8000-10000 with liver disease that are in urgent need of treatment. I for one still await. It would be better if the funding were x3 so as to get urgent cases with liver disease dealt, with which in turn, would bring forward those without liver disease onto treatment.
Currently, nearly all with hep c with or without liver disease are deemed fit for work, many get by without work and rely on family or savings to survive.
I think its wonderful that there is a cure?,I’m sooo disappointed ? surely it should be equal for all its an illness in itself to have the fear and dread of waiting untill your at risk of death to have the cure it would bring soooo much inner peace and hope to to people to live healthy happy lives now please please please surly money cant bring happiness but a healthy outlook,a hope for futer by being able to have the treatment now to cure it will save the nhs loads and loads of money and time . Please reconsider its has if they ate playing god with our lives.
Hi, I have just been started on a new course of treatment ( Ribavirin,,Olysio,(simprevir),and interferon peg!! Is this the so-called new cure available or am I just wishful thinking?? Thanks in advance …..John
No John it is not the most recent treatment. That treatment is called Harvoni (and similar products) which is highly effective and has very few side effects.
You have been placed on the old, outmoded, form of treatment – probably for financial reasons. It has lots of side effects and, depending on your genotype, is less effective and has to be taken for longer.
In short, you are taking relatively rubbish medication to save the NHS money (assuming you live in the UK)
Depending on how far your hepatitis has progressed, you may wish to seek futher advice. I for one wouldn’t touch the muck you have been prescribed with a barge-pole. I am waiting until Harvoni becomes more widely available. If it isn’t genearlly available by next year I will bite the bullet and pay for it myself.
Surely people who were given contaminated blood in the 80’s by the NHS should now be offered Harvoni to prevent further damage to their livers and the chance of a normal life from now on.
I am appalled that the NHS sees fit to only treat those who have cirrhosis with the new treatment, why wait until this late stage and not provide this across across the board for all sufferers which will save huge costs in the long term. I read that this is all to do with cost, yet the NHS treats people from other countries who have never at any time made National Insurance contributions and leaves those hard working citizens who have paid their way without adequate treatment. How shameful is this. Are we becoming another America??? When making these decisions, has anyone given thought to the fact that the individual who is denied this new treatment, will no longer be able to work due to ill health and therefore will be drain on resources when claiming benefit and not contributing to the tax pool.
Hi iv’e been waiting for treatment for this liver disease for 10 year’s now. Can’t wait to ridd me of this. Very happy.
The hepatitis C virus affects the liver’s ability to function and is most commonly a result of the use of infected needles by intravenous drug users.
I feel most strongly that you should Not be perpetuating the stereotyping of the victims of Hep C. Although you state “most commonly” you fail to mention the victims of medical negligence who were given a death sentence pre 1991 prior to hep c screening – the blood transfusion victims, the hemophiliacs and those babies born with this disease – the innocents.
You have a duty of care – members of the public do not have empathy for drug users and therefore there is a stigma attached to Hep C that makes life even more difficult for people. Please give all the facts rather than generalize.
I know lots of people with hep C all received it though medical negligence.
I am also unhappy with the paragraph about most hep c patients are drug users. I unfortunately contracted hep c from a tattoo studio. Have never injected drugs in my life
I do not know how I caught this disease. My ex husband was an iv drug user I can only assume I contracted it from him. If so I have had this for about 45 years. Surely the nhs should give the new treatment on merit and not on how bad it is. I was only diagnosed in 2012. I am now 67 feel that life is passing me by
well said, my wife only recently discovered she had hep c, we are both responcible people and can only think she was given the disease via blood transfusions she had for a serious accident in her teens. The stigma attached to the disease make it difficult to even tell family other family members.
Thank you for taking the time to reply. We know that patients are keenly interested in the developments of hepatitis C treatments. We have listened to the comments about cure and asked the chair of NHS England’s Infectious Disease Clinical Reference Group and Consultant, Dr Peter Moss, to respond. We hope that you find this information helpful, and please feel free to get in touch with any further questions or concerns you may have.
“Long term follow up studies have shown minimal rates of viral recurrence following a Sustained Virological Response (SVR) (i.e. undetectable virus 12-24 weeks after completing treatment) and the vast majority of experts agree that an SVR equates to a virological cure.”
“For most patients with cirrhosis treatment with antiviral drugs will lead to both virological cure and improved liver function, and hence to improved life expectancy and quality of life.”
“The policy document itself sets out the specific drugs that are available to patients who have chronic hepatitis C and cirrhosis and this is set out by genotype and by treatment experience. A copy of the policy is available to download.
Kind Regards
NHS England
When will this money actually reach the hospitals who had to delay our April start? What drugs will we be on offer? The PM said “we should do all we can” for victims of contaminated blood. After 30 plus years of ill health, Helping us clear the hep c virus without delay would seem a good start.
To the person who said there is no cure for hep C only sustained virological response, these new generation drugs which target the virus directly (Sufosbuvir etc) do make the word ‘cure’ possible. I tried the old ‘truly terrible’ treatment 4 times (starting in the days of non-pegylated interferon) and the virus always rebounded. Now after 12 weeks of Sufosbuvir etc I have cleared the virus and 6 months down the line I am still clear. They are beginning to use the word ‘cure’ now which they never did before.
Annie did you get the treatment via the NHS?
I wonder how many people have HCV who never did drugs out there? I think there are thousands…like myself, who never did drugs, but got it through contaminated blood…and I am a boring citizen, married with two grown children…HCV has been in the public domain for so long it also worries me that there may be people infected by HCV who do not think it is possible because of the social stigma connected with HCV. I recon five years down the road after more extensive HCV testing of general population it will be shocking how much this disease has spread to non drug users. Poor hygiene practices in the medical arena, dentists, hairdressers, manicurists, restaurants and even tattooist can expose general public to HCV.
This is great news…when will the treatment be rolled out for those of us with HCV who have cirrhotic livers? I assume the drug used looking at the NICE report will be Harvoni as it is cost effective for genotypes 1a/b, 4? I think as soon as you can you should give treatment dates for all HCV patients so they can get on with their lives knowing they will be treated at a future date.
I have been told by my consultant that I wont get the new drugs for at lest a year as I don’t have cirrhosis yet . Even though it was the nhs who gave me hep c 40 years ago.
Which drugs will be available to people with cirrhosis under this new funding ? Is it just AbbVie’s new interferon-free antiviral regimen Viekirax (ombitasvir/paritaprevir/ritonavir) and Exviera (dasabuvir) + / – Ribavarin? or does this also include Sofosbuvir/Ledpasvir (Harvoni) ?
This is great news for people like me infected with hep c through contaminated blood, all we need now if full and fair compensation !!!!!!!!
Now 19 June 2015 hopefully will mean I will get the go ahead with the new drug as my last course failed
What is the name of drug used as anti virus for hepatitis C. ?
Good news for those with cirrhosis, but still not good enough. The manufactures recommend treatment as early as possible for a high chance of success. This should be funded for ALL infected, especially in the case of people infected by NHS treatment. Also, yes,, it may prevent further liver damage but it is well known in the medical profession that it is NOT a cure. It suppresses the virus to an undetectable level. It is wrong to give people false hope of a complete cure
Harvoni does cure HCV and is most effective against genotypes 1a/b and 4. Genotype 3 will take ribovarin with Harvoni…It does suppress the virus on two levels so the body’s immune system can eliminate the virus. Some people who are exposed to HCV do this naturally…but most people exposed to HCV go on to develop chronic HCV after 6 months. That is a very simplistic explanation…for more scientific minded: http://www.infohep.org/Hepatitis-C-treatment-factsheet-iHarvonii-sofosbuvir-ledipasvir/page/2942285/ if you take Harvoni for 12 or 24 weeks and your viral load is 0 after treatment, then you are cured. You can be reinfected…there is a HCV vaccination on the horizon. Bad hygiene practices in all walks of life whether it’s your dentist, hairdresser or phlebotomist can pass HCV on to others…especially as this disease is under diagnosed…there is a huge ‘pool’ of people with HCV who got it through medical procedures or other means totally unrelated to drug use or alcohol abuse. I agree that everyone with HCV should be treated asap.
As can be shown by one case just surfaced, having a viral load of 0 does NOT mean a cure. A member of a Facebook group I know well had the 24 week course and the Hep C has now come back.
Why do the NHS continue to refer to this HCV treatment as a CURE, many eminent specialists continue to tell us that the HCV virus NEVEER clear completely and the treatment “just suppress the virus and renders it below what present tests can detect, if we are cured, why do I have to continue to have LFT, PCR and ultrasound every six months?
Unfortunately I will believe this when I see it! I was given contaminated blood and it caused HepC and an STD which made me infertile. I could not have the old treatment and have been waiting 10 years for this. I, along with others were supposed to have it in January this year and I have advanced cirrosis, but they put us off because of the cost. Next it was meant to be April, but NHS asked NICE to put it off again because of pricing. Some people have had it admittedly but not many. Anyone with cirrohsis was supposed to have this but again they pick and choose. Also I would like to point out that we are never CURED!! this makes many of us so angry, we become so low in our count that it cannot be detected that low. That does not mean cured, it also does not get rid of the awful sympoms which HepC causes, so stop telling people they are cured! If we are cured why will they not take our blood for donations?
How come some people after a period of being so called cured, test positive again?
And on a final note I would like to point out that ANYONE can get this through blood on blood contact, some are higher risks than others but it is not MAINLY drug addicts. Car crash victims, Women giving birth, operation, anyone can get this from dirty blood, admittedly it is far better and scanned better than ever but we are once gain getting blood from abroad so take care EVERYONE!!
Hi
I would just like to say as a contaminated blood victim you make this sound like you are doing us a favour when infact all you are doing is trying to correct a great wrong you did to all us victims of contaminated blood, I would also like to point out that there is no cure as you stated as these drugs only sir press Hep c, and undetectable is 14 and below but if it doesn’t reach zero then hep c can replicate and replicate , so in truth this is no cure, also these drugs have not been tested on patients like myself who are on unlicensed drugs from USA for other conditions, so people like me are stuffed . I welcome your comments back on this but I very much doubt you will , as you are content to have abused us for the last 40yrs and like to bury your heads in the sand.
I would just like to point out, these are not CURES. the testing of Hep C can only go down to 12 so is only possible to say undetected. Nobody is ever cured till a new test is developed to ,easure the Hep C virus to nil, If we are Lucky we are UNDETECTED NOT CURED.
And they make it sound like they are doing us a favour, when it was given to us as Tainted blood from the NHS in the first place.
Note to editors: In thousands of cases, this goes some way to the NHS making good the damage they did by infecting haemophiliacs (and others) with contaminated blood three decades ago.
Just saying…
Obviously good news for sufferers. More detail need as to what drug therapy will be available. Especially for Patients with Hep c g3a with cirrhosis who are treatment naive. Please email me.
“More detail need as to what drug therapy will be available.” …. Indeed. Harvoni eg has not yet arrived in England on the NHS.
and Abbvie #HepC treatments Viekirax and Exviera approved for use in Scotland by SMC yesterday.
SO GRATEFUL, having been infected with hepatitis C from blood transfusion when I lost a baby in 1987, failed 3 treatments lasting one year each, now I have cirrhosis and 6 monthly screening for liver cancer, I have been waiting for these new drugs to be available. hoping they are a life saver form me and many others
Good luck Anne x
Good luck to you and me and the other thousands of people infected by this illness. I started treatment Harvonia 6 weeks ago had 4 goes at old stuff ,so ill, had a transplant seven years ago so this is my last go. Have a good day Anne.
Best Of Luck Anne, you are brave.
I want to wish everyone the best of luck and to keep pushing for the cures.
We are the victims of medical negligence why is that not on the criteria for issuing the drugs? They gave us a death sentence
they should be doing their best to right the wrong.
Yes Anne, the NHS should treat people given Hep C through contaminated blood NOW, not sometime in the future – TIME MATTERS.