Still waiting HCV Treatment

I was so excited to learn that there is a cure for HCV October 2014...and by January 2015, thought treatments would begin in UK. I have cirrhosis now..treatment naive, genotype 1b. As my health declines (neuropathy, fatigue, etc...) every month I call my liver specialist nurse to find out when my treatment begins and told to call back next last call was really depressing because now the commissioners, in their wisdom have decided that my genotype should be treated NOT with Harvoni but Abbie Vie Pak plus Ribovarin...this is like a form of slow torture for me...all because of a .5% improvement on the cure rate, and it is cheaper, so, I have to under go more blood tests for Ribovirin(used to treat Ebola, some patients have to have blood tranfusions due to dangerous drop in RBC) and take 540 pills over 90 days..side effects cause a 2% drop out rate...Harvoni side effects cause a 0% drop out rate -90 pills over 90 days..

And the liver specialist nurse cannot give me any idea of when I might be they have not hired any more staff to handle the uptake in treatment...but the NHS has enough money to pay loads of commissioners who will offer a cure but at their determination and when they say, and to save money...this is world where the patient is actually the last to know what is going on regarding their own care...and why. That is very damaging to the patient.

My best care would be to receive treatment within a reasonable framework of time..(that time has passed already)...and be advised when this will happen and given a choice of treatment that will be most successful from the start.

My excitement at this new found cure is replaced by anger at the total lack of communication and compassion shown to all HCV patients made to wait in a queue because of NHS lack of foresight and greedy pharmalogical companies.

13 Replies

  • I don't know too much about these treatments but I fully understand your frustration. I don't know if its possible to go to another hospital, but it might be worth looking in to?

    It's all about the money and who gets paid. We live in very depressing times, I was only reading an article in the New Scientist yesterday saying that capitalism is holding back progress. But I digress.

    Good luck, and keep pushing.

  • It is very frustrating for you. There have been treatments available to cure HCV for many years, not just since 2014. The earlier treatments used either interferon or interferon plus ribavirin, and had mixed success rates. There are 4 Genotypes and different stage of liver damage to be considered before putting people on a particular treatment. Some of the newer treatments have added in a different drug (but still use interferon and riba for some of the treatment) and have shortened treatment times. Some of the newer treatments recently out of clinical trials dont use interferon at all. Its up to your hepatology team to work out what treatment will work best for your genotype and your level of damage. Also of course finance comes into it, the more recent treatments are very expensive and hospital budgets dont stretch to treating every patient on their books, so they have to choose. The older treatments may be cheaper but dont have such good success rates and have horrid side effects. It must be very difficult for the medics to prioritise and while frustrating for you not to when you might start, its probably difficult for them to give you a definite answer too.

    Have you thought of going on a clinical trial?

  • Hi xxxx

    I know exactly what you mean 😩😩😩 poor hubby had to endure 20 + weeks of a 36 week course of interferon and riba (until his platelets were 20 and he was really ill) - they assured him new treatments were coming out all the time 😅😅😅😅 then he was told he would have to be transplanted first but after transplant they would treat him - 16 month later and he has been told he 'does not meet the criteria' for the latest treatments ?????? And they are aware that the 'hep c' has started on his new liver 😖😖😖

    I read somewhere (could have been on here) that there is a reluctance to treat post-transplant as not enough research has been done - we were told by Kings hepatologist that they were treating poorliest people waiting for transplant first ??

    My old fav 'hvc forum' will probably have loads of info on who is being treated etc - I would keep on at them - explain your symptoms and how they affect you (transplant tales on bbc 1 showed a woman who had what was shown 'very mild HE and she got listed for transplant 😧😧😧😧😧) I would also make a diary and really put your case across !!! It shouldn't be like that but I am sure it would be far more beneficial to treat you now than to leave it until you get worse 😘😘😘😘😘😘😘

    Good luck xxx

  • It would seem a good idea to clear the HCV as soon as possible once he had the new liver...he may have a new liver but the rest of his body has endured the HCV since he was originally infected. HCV affect all parts of the body. The decision to wait is not considering the damage long term to the over all health of your husband.

    However, this decision might also be based on the drugs he has to take to keep the body from rejecting the new liver...maybe they are not sure the of the side effects the new drugs, like Harvoni, might have on them?

  • There are actually 6 genotypes, with other sud genotypes. Here is a table of the recommended treatments for each sort.

    If you cannot access it mail me and I will get it to you.

    Full lengthy report .

  • hi I still have the same feeling of anger you I am lost between the opinions of doctors about my treatment HVB following the advice of our friend Bolly I have to make a consultation in another doctor who told me that I have to take antiviral drugs for a long time at this point I thought my other doctor that he said that we must wait a little 

    to take the medicine even if my viral load has arrived to 2500 he did not think the risk of ignition of my liver that can be developed at me I just show you that you health management here in the developed countries months a major problem for patients who suffer and hope to die only the rich have the right to travel to developed countries for the treatment of patients is no medical skills not support associations not imagine that my country is no association deprives patients hepatant or Sometimes I have a strong desire to leave the treatment and leaves fallen for the previous reasons and also because the drug here expensive cost even some patients who have medical coverage for plus it has the Lobie problem drug companies that sell many expensive drug in a world of short wild capitalism all that only allows to hang a life ....

    especially for my little girl I love her and our friends and family who loves us. good luck.....

  • Thanks everyone for you support and for the information/links.

    I just read this article...according to this we should be receiving our treatment sometime this year.

  • only a thought could you go to the newspaper to highlight your dilemma and lack of treatment ,your write-up makes for a strong case. Good luck .

  • Hi Art the new Abbi Pack although more tablets to be taken plus Ribba is hard but the cure rate is better even than friend has just finished this course of treatment and has cleared the virus..The success is nearly 100% ..although the Ribba is difficult at least the chances are better than Harvoni alone as they offer only 12wk and there is a chance of it coming back before the 12wk.

  • Thanks Ballie, I am so happy for your friend...yes, I will take these drugs if my liver specialist and the commissioners deem them the best treatment fo me.

    However, the cure rate, depending on which results (trials) you look at are not that have to take the drop out rate into consideration, I believe. And the Abbie Vie pak has a 2% drop out rate that Harvoni does not...0%..that right there make Harvoni a better choice in my mind. 2% patients not treated or cured because of side effects. That must cost the NHS a lot of money..then they have to go on Harvoni anyway.

    And I have a terrible time swallowing pills..a 'gag' reflex from#¥** , so does my younger sister. It is the way I am drives my dentist nuts at times. I have had to crush up bigger pills and put them in gelatine capsules to make sure they go down. Telepivir was impossible option for me because of size. Thank goodness most people do not have this problem.

    So, I have had plenty of time to dwell on this because no one in NHS has sat me down (or anyone else at I know) and given me firm treatment dates or treatment options yet. It is only hearsay at moment. I hope this will change soon.

  • Hi art4949--Just been reading your posts about getting the new Hep C treatment, I was having difficulty getting the new treatment from my transplant hospital (Leeds) after my transplant as they kept telling me I didnt fit the criteria, or that I was the wrong geno type (i'm 3) and that they were not sure whether my new liver was rejecting or whether it was the Hep C causing the hight ALT levels. had 5 biopsys after my transplant the last one going terribly wrong!!! but i survived as i do :). Any way, fed up of getting negative answers as i knew the treatment was available I got my self refered to North Manchester General Hospital Infectious desease clinic.

    Basically I told my Dr to refer me and he did luckily,. They did a fibro scan and put a case forward for me to get the treatment and as miracles have it I was accepted.

    I know now they now have the permission to give the treatment to more people and are one of the top hospitals regarding Hep and now have the go ahead to deliver the harvoni etc. I do not no how far you are away from Manchester (but I think now a days you can ask to have treatment where you want) it might be worth asking your Dr to refer you to NMGH or, if you go on line find the Drs ( Dr Javier Villar is one) and phone them up. thats what i did first, being a cheeky sod that I am, but at the end of the day it is your life your body and you have to do what you can even if it means pushing your self forward. I know if I hadnt pushed I would still be waiting for the treatment. Good luck to you and I hope you can get the cure soon. Stay positive xx :)

  • Hi dizzime

    Thanks for that advice...I live down near Brighton so Manchester is quite a distance. I will look into it...I would travel there if it met getting cured. I will see where else I can be referred to that might offer treatment Now as Brighton is stretched to the limit it seems.

    I cannot believe they did so many biopsies on you rather than a fibroscan? It is so risky, especially on your new poor liver.

    Ridding yourself of HCV will certainly give your new liver a chance. With genotype 3 will you take Ribavirin too?

    Let me know how your treatment is going. We have to fight for our cure don't we? I hope that changes soon.

    Thanks again?👍😌

  • hi -yes I had the Harvoni and Ribavirin but they had to lower the Ribavirin after 8 weeks, treatment seems to have worked ok fingers crossed it stays that way. I am now on my next quest to get off the prednisalone which they upt when my new liver started rejecting, this has now calmed down as I thought all a long it was the Hep c causing the rejection not me, and I was right lol. the pred has made me diabetic with insulin, bloody 4 injections a day which I am fed up of. I have been low carbing and have managed to get my insulin really low but if I can get of the Pred I thinks I can get rid of the diabetes. sounds right in my head any way and being a fighter I will do it, ha ha ha. good luck to you on your quest to be rid of the dreaded hep C I really hope you get the cure soon. keep strong and stay fighting. x :)

You may also like...