Treatment for HCV...my thoughts on this matter

[art4949]

Is anyone out there receiving treatment using the new drug Harvoni yet? I sure hope the NHS starts this treatment soon. It is a shame that everyone with HCV cannot have treatment now...once we are cured we will no longer be a burden on NHS unless we have to wait until we are so poorly that even after treatment the NHS will have to look after our damaged livers. Some HCV sufferers are already in a bad way...this cure will at least stop the damage done to the liver by the virus.

For me, in the last 3 to 4 years since I went over that 30 years threshold of having HCV my alt/ast serum alpha-feta protein and fibroscan have got a lot worse compared to the lull in the previous years. Another marker for me is that I am over 60 years old now. I do not drink, smoke, or take drugs(never) and eat healthily as well as keep my weight down...so, as there is little known for sure about HCV long term effects (HCV known since 1987) on a person's health...I wonder if any scientists are doing actual research and data collection on long term outcomes of living with this disease? Also, different genotypes perhaps influence outcomes.....does HCV progress faster in certain genotypes than others? If a large proportion of HCV sufferers linger on for 30-40'years with HCV but their health only begins to deteriorate more rapidly as they age...resulting in poor quality of end life where most develop liver cancer, need transplants or die of complications after long term care? At least the cost results in a cure, that is certain...with almost no complication...in 12 weeks (or for cirrhotic patients 24 weeks)...to be cured, what Joy!

[Hidden]

Bless 😘😘😘 agree with you xx

Unfortunately (like most things) it comes down to money 😔😔 hubby had transplant 1 yr ago and is taking 'tacrolimus' - he has been fobbed off about starting new treatments and basically told he won't get them until he gets really poorly again ????? However - I being a nursey type read through the leaflet that comes with medication and it says that you can't have the new treatments if on 'tacrolimus' (and other anti-rejection meds) ???? Which makes no sense to me at all 😣😣😣😣😣 why not ??? Because if that is correct - all those that have been very ill and had a transplant - will then have to wait until the HCV gets the new liver and then what ?? It's very confusing - I would have thought the cost of a 'treatment' would be far less than 2-3 years of regular hospital admissions/medications/ ambulances/GP appointments/scans etc - but hey ho 😄😄😄 what do we know ????? It's not Drs fault as they just use the 'allocated' funding - the gov should put more money into NHS (I am not going to get on my soapbox) xxxxxx hope you are feeling well 😘😘😘😘😘😙😙 xxxx

[Zsuzsanna in reply to Hidden]

I suggest you write a letter to your MP. There is a template on the hepctrust.org.uk website. Follow the link to Get involved then How you can help and Write to your MP. I have also started a campaign on my Facebook page with change.org I don't know if you can sign it?

I also think like you do that patients should be able to get the drug of they have been diagnosed with HCV.

[dizzime in reply to Hidden]

Hi robswife. I have answered art4949 regarding my treatment but wish to let you know that I am on anti rejection drugs - Sirolimus, MMF, PRED and all the other stuff and I I am now cured of the Hep C type 3. Keep pushing for it. Is it the transplant hospital who is saying he can't have it as sometimes it is out of their hands. Have you got an infectious desease clinic near you, I am at NMGH. If you have ask your GP to refer him to them, or phone them for advise. Get a fibro scan done to see what damage the hep is causing and ask them to put a case forward. Keep asking. Good luck x

[art4949 in reply to Hidden]

Hi Robs wife, I was looking on the Harvoni site for the drug you mentioned tracrolimus can be taken while using Harvoni. Obviously, your liver specialist will be the person to discuss this matter with...your husbands genotype will also affect whether he take Harvoni alone or with ribovarin. Looks like as of June 10 more funding has been allocated...£190million. Hopefully, your husband will be placed on a list for treatment...I think you can have your case put forward to a comissioner as a special case..not sure if it is your GP or liver specialist who does this. I actually got a letter from department of health suggesting I do this last month...but my liver has gotten worse, so my liver specialist has already put me on list for treatment.

Good luck!

[Zsuzsanna]

I am 73 and I have never done drugs, tattoos, don't drink or do all those things which indicate infection but my liver function tests have been high for 8years. Yet it was only last summer when I saw a different GP that I was sent off to the gastroenterology where they found the virus. I have been given blood 65 years ago but I cannot believe that it took that long to 'raise its ugly head'. Nobody knows!

I have started a petition on change.org for the government to allow these new drugs to be available. Also wrote to my MP using a letter template provided by hepctrust.org.uk

We need to shout loudly!

Zsuzsanna Snarey

[art4949 in reply to Zsuzsanna]

I will look for your petition and sign it! Most doctors are not very informed about HCV...I think unless you are a drug user or drink excessively they do not even entertain the possibility that you may have HCV...so, you can go for years undiagnosed. And even if you drink moderately with this disease, it will slowly destroy your liver...I suspect once you have HCV for 30+years the progression of this disease begins to accelerate???probably depends on your genotype! lifestyle (including eating habits &drinking habits) and your age...your ageing body will not be so efficient at warding off the side effects of HCV.

It will be interesting to see how fast the NHS take to roll out the new (Harvoni) treatment now they have funding...but still only for those with cirrhotic livers...as the costs come down, then so, hopefully, the treatment will become available to all. I am hoping this process will speed up over the remainder of this year...the drug has only been available since October 2014. 2015 should be the beginning of treatment for ALL HCV patients.

I think a letter to Gilead is also a good idea..they are USA drug company in California with offices in UK too. It is their overpricing(my opinion) of this drug that is making it unavailable to a vast majority of HVC patient in U.S. And Europe for now. I would guess the 6 month wait has been so the NHS could get Gilead's price down so more money is available for more HCV patients to be treated.

Good luck with the petition....we all need to make our voices heard...the NHS need to let us know when we will be getting our treatment...unfair to put our lives on hold wondering when treatment will be available to us. Firm dates.

[Zsuzsanna in reply to art4949]

Thank you for your suggestion to write to Gilead in California and UK! I will do that. Thank you also for signing my petition on Change.org Allow all patients access to new drugs.

[dizzime]

Hi art 4949. I started on Harvoni (sofosbivur/ledipasvir) and Ribavirin on the 1st of April 2015, my transplant was August 2013. I was Hep C geno type 3. I don't know how long I had Hep C previously or where I got it from. I did have some tattos done at some dodgy places though in the late 70s early 80s???. Ah well you live and learn. Anyway my virul load was over 58 million at the start of the treatment, then after two weeks it was 97, then after another two weeks it had gone. Yeee hah. I think I managed to get through the panel because my fibro scan was 12. 8 and the Dr put my case forward. I am now near the endfof the 12 weeks and apart ftom being very tired and being very anaemic I have had no other side affects. I agree with you this treatment should be given to everybody asap and I really hope you get it soon. Fingers crossed for you. X

[art4949 in reply to dizzime]

Hi dizzime,

This great news to hear you have been cured with few side effects, ribovarin can reduce red blood cell count, making you anemic.

.I am on the list for treatment just waiting to find out when..

.On the NHS site and the Hepatitis C Trust newsletter site it is claimed that the NHS just got £190million more funding To treat patients with HCV using new drug....great!

My fibroscan is 11.5 which is the cut off for treatment.... I imagine you got treatment early because you had a liver transplant as well. My GP (not liver specialist) said there was nothing he could do, when I asked if he could look into getting me the treatment...that it was up to my liver specialist...as a GP he has hardly been pro-active.

Hope your energy levels pick up once your anemia is gone....then you can really celebrate, ha! I'm taking a long over due trip when this is done!

Thanks for the good news!!

[Alvess123]

I was healthy until I discovered I had hepC, As soon as I started treatment my health plummeted, I was "cured" 4 years ago and since then I have been ill, at present I have cryoglobunemia plus al, sorts of aches and pains, lack of concentration and extreme fatigue. The worst thing I ever done was to take the drugs "interferon and ribaron" I may be clear of the hep but my life has been destroyed, agh!!!!!!