This information regarding Gilead and their new combination pill, Harvoni...it was published in May 2015 ...it is a movement to try and get Gilead to reduce price of drug and release patent so cheaper generic versions of Gilead can be made available ...this is so everyone who has HCV can have access to treatment and health care systems like NHS are not forced to reduce care due to costs....there are movements such as hepCoalition.com
which are active in forcing Drug companies to reduce prices for treatments for HCV.
Actually,my specialist told me just this week while I'm here in hospital that the Harvoni will be null android in a year..there are new drugs coming that will take Harvoni out, as they will cover all genome types etc. it will also be 12 or 24 week treatment with taking pills!
To dckimberly, my thoughts on this matter and a link regarding the toughest to treat HCV with new drugs:
That would be fantastic...I know there is a drug that is in trials now by Gilead that seems to be working for all genotypes...also, a vaccination for HCV is in being developed...so, HCV may be eradicated in the next decade...but, only if the costs are not too high.
For many of us it might be too late to wait for the new drugs if they are approved next year (2016) and then have to wait for NICE guidelines to be published before it is rolled out by NHS.
Harvoni was approved in October 2014. Yet, unless a HCV patient is very ill or has special health related circumstances, they (we) will still be waiting to be treated with Harvoni or any of the new HCV treatments. (Abbvie Viekra pak, etc)
For many of us it is the quality of our lives...,living with the continued endurance of many HCV related health issues (of a declining nature) as well as the psychological affects of not knowing when our treatment begins, that hit hardest...I liken it to standing on the edge of a precipice...most of us have have had HCV for decades...so, we are older, beginning to feel the vulnerability of our age and torment of our disease daring to hope we might actually be cured and avoid the worse ravishes of end stage liver disease. I cannot imagine letting anyone I love go through such uncertainly where their good health is at risk. For, if I had the power, I would administer their cure immediately. But that is a very personal, emotional reaction to a situation where the power lies behind the beady eye bottom line focus of monolithic multinational pharmaceutical companies.
hi that message before was for dc kimberley sorry but i agree with you ive just been granted the harvoni multiple treatment start tommorow i like you have had hep c since early 80s so a long time and it has ravaged my body phyisicaly and mentaly my liver shot to bits spleen etc last platelet count 36 so it can only do me good so what d c says i dont understand also im genotype 3a all the best for the future ricky
I am 59 and was contaminated during a 6 pint blood transfusion in 1974 when I was 18. So I have now been contaminated for 41 years and counting............ I feel like I have been living on Death Row for the last 41 years! Been stuck inside these four walls for over 5 years now, never seeing no-one nice again...........I have a Carer but that's not much fun!
Now I have Cirrhosis and so now instead of just being able to take Harvoni I will now need to take Harvoni and Ribavarin. Very worried about having to take Ribavarin as I already have Lung Disease and worried the Ribavarin may make this worse. I strongly believe my Lungs are being attacked by the Hepatitis C but I can't have any biopsies so we don't really know very much at all. Also I live in an extremely remote place and often get snowed in or iced in - NOT a good time of year to start treatment! They were supposed to be starting me in July which would have been far better!
I can't see my GP's being able to get someone up here to do all the relevant blood tests and being able to collect medications weekly over the winter months. I often spend years not being able to get to any appointments. Now and again I get the odd month when I can cram in some appointments. Delays yet again. Last time I spoke with my Nurse I told them to just give the treatment to someone who has a better quality of life! So sick of it all! One minute they want me on treatment urgently the next there are delays on their side! This has been on and off since around the end of 2014. The problem is that I have the Lung Disease and I was also born with a rare genetic disorder called Ehlers-Danlos Syndrome so the research is non-existent. New warnings or new information and it causes yet another delay!
Hoping you will all be able to be treated as a matter of urgency - the sooner you can have it the more likely it is to be gentler drugs and more successful outcomes!
Keep Smiling or in my case Keep Twinkling.
Love and Hugs to you all.
Twinkling Star
PS Ricky Rocket are you having to take Ribavarin with the Harvoni? Have you got Cirrhosis or Lung Disease?
You are right it is like being incarcerated. As the health deteriorates, being well becomes a memory. I too live in a remote place, and like you traveling to appointments is not easy. I had to cancel my last appointment due to weather. Nor can I rely on my GP to take samples, last time we tried that they had to have 3 tries just to get the blood in the right tube (tubes are colour coded to prevent mixups). So every 6 weeks I have to travel to Edinburgh for clinic visits.
hi yes i have cirrhosis had it a long time very bad now saw my consultant this morning picked my meds sovaldi the other one cant remember name and the dreaded riba did ask if i get side affects off the riba could ileave them out she said anything bad to bell her and shed see about dropping them took my first lot of meds about 1030 am feel ok at mo just tired and sick or vice versa lol ill let you know how how it goes with the riba all the best ricky
Twinkling Star, do you realise I beat you by 1 year. I have had HCV since Sunday 17th June 1973 and I am not boasting - I lost 14 pints! I failed one of the first Drugs Trials with Interferon and Ribavirin.
Now looking back on it, I realise HCV has ruined my life. It turned to Primary Liver C in 2013.
As you know I am on the treatment - Harvoni and Ribavirin. If I was not on this treatment I would not be writing this.
I am so sorry that you have been treated so badly. It just is not fair. I agree with you about living in a remote area and access to the treatment and giving blood two weekly and then monthly during the winter months. Please keep in touch because the people on this website all care and support each other.
Whilst on this treatment I have to keep reminding myself:
I will not give in
HCV will not win!
If like Kimberley says new drugs are being trialled now they will have no excuse to keep you waiting, By the way "Twinkling Star" is such a visual name. Just remember to keep twinkling. xx
Not often I meet people who have survived so long. It is a joy to meet you. Hep C has completely destroyed our lives and it is an horrendous disease with terrible consequences. We must all help each other get through this and I hope we will all be able to win the war against Hepatitis C.
So sorry to hear that you developed Cancer. Have they been able to treat the Cancer? I dread this happening to me as I am sure with my genetic condition the Chemotherapy would just kill me. I am not eligible for Transplants. I also have Lung Disease and am on Oxygen 24/7 no doubt that it is the Hepatitis C affecting my lungs and worried about the side effects of Ribavarin such things as "breathlessness" scare me - I would never survive with even more breathlessness.
I wish you all the best Tatjana and hope they have managed to control the Cancer for you.
I am thinking of you all. I am specially thinking of those of you who are going through treatment - not an easy journey to take especially if you experienced the previous horrors of Interferon! Luckily they considered me not suitable for that treatment which has turned out to be a blessing. I hope for the best for all of you however you became infected! I am wishing you all the best in your journey towards SVR. I know the virus is never completely eradicated and if you have Cirrhosis or Cancer the damage can never be undone. I have read that treatment usually improves quality of life so here to us all raising our glasses of non-alcoholic beverages to a long and better quality of life!
Best wishes to you all.
Keep Smiling or in my case Keep Twinkling.
Love and Hugs.
from Twinkling Star
PS: Those of you who are on treatment please try to keep us informed of both the good and the bad. I am watching carefully being so fearful of going onto Ribavarin does not help me to rush into treatment. However, the longer I leave it the harder it will be to obtain an SVR. I wish they could make up their mind whether I truly do have Cirrhosis or not! Then I could make a more (forgotten the word I am looking for - grrrr brain fog) decision about how to move forward.
Is there anyone around who has had Ribavarin but has not had Interferon who could tell me if they have been left with any long term problems as a result of taking Ribavarin.
Please let me know if you fit this category. I am keen to find out whether the Ribavarin would affect me in the long term.
I have been diagnosed last October, but probably had HCV for 10-12 years. I am not considered 'ready' for treatment because my liver is not bad enough. I only have Fibrosis 1-2 so they are keeping an eye on me! I find it very frustrating that I will have to wait until I develop cirrhosis before I can have treatment and then the treatment is much longer and more difficult.
I have been having health problems for over 10 years but had no idea of the cause.
Have you signed my petition to campaign for treatment on Change.org?
I understand that but has transplant never been explored as an option? People practically do have to have end stage symptoms before a transplant is carried out - my hubby was listed for 10 months but delisted because he is actually too well. It seems a bit ludicrous for your hubby to have been cured of Hep C for them to then just let him pass due to the damage it did before hand.
Is there no chance at all? It seems you have to have cirrhosis nowadays before they will treat the Hep C but it doesn't just end there unless sadly they feel he is already too poorly to risk transplant.
A final update to this link of mine.,,I took the 3 month course of Harvoni…refused to take Ribovarin as I felt it was unnecessary risk to my health..lower RBC etc. they finally relented and I cleared HCV…undetected in April 2016. Absolutely no Side effects,..took one tablet Harvoni each morning drinking loads of water (64oz per day) felt great after one week. My Fibroscan went from 11.5/12.0 to 8.2 within 6 months of c,earring virus. Don’t drink except special,occasions. Scans and blood work including GGT LFT all markers for liver cancer so far normal. Harvoni literally saved my life along with the fantastic NHS team down in Brighton, I contracted HCV through blood transfusion when in hospital giving birth to first child…she is now 45 and I’m here to celebrate with her. Eat well, watch the weight walk a lot and practice mindfulness..it all helps,
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Three weeks after HCV treatment with sofusbivar and ribavirin still not feeling better
