HCV and Ground Hog Day

[art4949]

Hi

This is for all of those on this forum with HCV who are waiting for their treatment as we head into the winter months. If you read the most recent report from NICE, all 80+ pages you will still have no idea when you will be treated.

All I can conclude from this report is that the NHS thinks it cannot afford to treat all HCV patients and NICE thinks the NHS cannot afford not to looking down the road further. It is all about investment and staff capacity to manage our treatment...neither is in place as far as I can make out.

For all of us, who are the ones suffering from this terrible disease and the effects it places on our remaining good health...we sit waiting for our cure to be offered...that email, or phone call...whatever, whenever...while an overstretched, overworked liver specialist staff treat the very sickest of us first throughout all UK. In fact, if you don't have cirrhosis or decompensated liver at the moment the NHS has no obligation to even cure your HCV until NICE publish the final guidelines.

So, I woke up this morning, I still have HCV and cirrhosis and feel...well..like all of us do with this disease....unwell, but still keep going....Its Ground Hog Day for HCV patients in UK...one of the wealthier nations in the world but we might as well live in the poorest...at least Gilead, makers of Harvoni, would treat us there for free.

It would be wrong for me to try and cheer any of us up..and getting angry has little affect on the huge monolithic bureaucratic system that operates the machinery that will eventually treat us..I feel like ' chicken licken'and the sky is falling ...soon they will have to treat all remaining HCV patients for collective depression after being made to wait so long for their treatment.

So, Unless I pay for my own treatment privately I am forced to sit and wait quietly for that treatment.

Finally, like in the movie, Ground Hog Day, I have concluded that while I wait I should try and live my life to the fullest and stay healthy through positive lifestyle choices. One day I will wake up and I will I have been cured. So, on a positive note, I am pleased there is a cure in my lifetime..

Thanks for reading this...another vent from yours truly. Art4949

[RodeoJoe]

I agree whole heartedly.

It must be so frustrating waiting for your turn when you know that damage is being done. And I can only imagine that waiting will increase the cost of the treatment as people continue to become more ill.

However we are told that this is how the system works, that research will not continue if companies don't get a nice healthy profit back and that's capitalism for you. To be honest it's all nonsense, I'm not going to go into here but there are a few people that benefit from this system and many people like yourself who suffer for it.

I would ask your consultant/hospital at least once a week, ask how you get the treatment and currently why you aren't. Do everything to become a problem for them until you get what you need.

[ballie52]

I understand how you feel Art..I also have cirrhosis low platelets and constant nose bleeds and haven't been able to sleep for well over 8mths now..I also have been told I am stable enough to wait..I hope to be treated early next year but don't have a definite date..although I am on their list..it is very stressful waiting but what can we do..let's just hope things don't get any worse before we finally get our chance to cure this debilitating virus.

[Hidden]

Well said 😘😘😘😘

[Hidden]

Thanks for the rant art4545. Just to make you even more uptight consider that Harvoni is 98% effective except in the case of genotype 3 treatment can fail. So there you you are waiting for treatment and inevitably getting sicker. You get so sick that you qualify for treatment, the treatment fails, because according to the medic's the liver is so damaged. Next option is a transplant and re treatment. Cost of 12 week Harvoni £40,000 liver transplant and after care £70,000+. Loss to society of a productive individual, and so it goes on.

It is in everyone interest to beat this nasty thing. Personaly I would nationalise the drug industry. Then we may have a chance of decent affordable healthcare through the NHS

[RodeoJoe in reply to Hidden]

Nice idea but you can't nationalise a global industry. However in principle I agree.

So lets say Harvoni costs £40,000 per patient. The cost to actually produce the drug off the production line is a fraction of that, most of the costs were spent on R&D over many years.

So the company that manufactures the drug need to get their money back, but the way I see it is that at present they won't get any more than what the NHS is able to pay. So patients suffer.

However they could sell it at a much lower price so that all patients can be treated and still get the same money back from the NHS.

Right?

[art4949 in reply to RodeoJoe]

Thanks for that Rodeojoe & Boab11, I can say that Gillead have actually covered the costs of their research and development..to the tune of $3.5billion profit over and above expenditure last time I checked...of course, this is ongoing, as money is also invested in further R&D...for example, they are doing further research through trials on drugs to treat the more difficult genotype 3 (I will stick to HCV) . And they are working on a vaccine. I feel they (Gilead, Abbvie, BMS..) should drop the price of their drugs even more (Harvoni! For example) once they have made such a considerable profit...or at least waive the patent before the usual 10 years...they have already done this for India, with strict regulation. And Harvoni is readily free or sold at a very low prices in parts Africa.

So I absolutely agree with you that now is the time to make Harvoni available at an affordable price to all health services like the NHS...get everyone treated and further down the road, vaccinated so HCV can be eradicated.

Outside my personal concern for my welfare and for people like ballie 52 and the 'slippery slope' we inhabit, is that we have become numbers on a list. Whether or not a HCV patient is even placed on that list to be treated depends on the number scored on a Fibroscan test. Those off the list who still have HCV have become zeros priced out of treatment because the NHS cannot afford treating all patients at the moment. So, if you are well with HCV, and do not have cirrhosis...generally speaking...you will not be treated by the NHS.

The drug companies holding the treatment/cure have plenty of pills and have set the price for these pills at such a premium price that only the wealthiest and/or the most unwell will be treated. This has nothing to do with discovering a cure to save the patient...it is a machine that operates to make itself look good and while positioning itself for the greatest profits. No one working for Pharmaceutical companies need feel guilty or responsible, they just do their part of the job and stockholders rake in the profits while CEO's pat everyone on the back...I wonder if I wouldn't do the same in their position, looking to the good being done in Africa, while ignoring the damage such high prices are doing to health care systems across Europe and to Medicare in USA. There is already a disparity in good health and care between the wealthy and the poor in USA. This disparity affects us all, make no mistake!

When the next cure comes along, what will that cost be to us as a society?

[ballie52]

But what can we do!!

I really hoped when they said everyone with cirrhosis will be treated now that this would be the case. I am on the waiting list for Harvoni but have to wait maybe another 6mths despite the fact that my platelets are low constant nose bleeds brusing and lack of energy drain me on a daily basis..it is very depressing but they told me that certain blood tests have to elevated to a high level before you qualify for treatment even with cirrhosis. .OK I have grade 4 plus all the other problems that go with cirrhosis but apparently not sick enough to warrant treatment right now!!!..do we have to go down the end stage before we are treated!...what can I say..no wonder Art is feeling low..what all feel like this right now!

[TwinklingStar]

I have been told I have Cirrhosis Stage F4 and now they are rushing to put me on treatment. I have been telling them for over 3 years that I definitely have Cirrhosis but was ignored.

Now the worst thing is that once you have Cirrhosis of the Liver the cost is hiked up. They already put me on Hepatoma Surveillance Programme (Cancer Watch) and urgently crammed in many tests within two weeks! Now the news is that because they have now confirmed I have Cirrhosis I need to take Harvoni AND Ribavarin to achieve an SVR (Sustained Virological Response). So now more costs for the NHS! More side effects to be concerned about as I have Non-Specific Interstitial Lung Disease and Ehlers-Danlos Syndrome and am prone to having terrible side effects from numerous medications.

I am Geno Type 1a and contracted Hepatitis C from a six pint blood transfusion at age 18 in 1974. I am now 59 and I am currently living in Scotland.

I think it is outrageous that the treatment is not available for everyone. I am upset that I now have to take an extra drug due to the delays in giving me treatment. I am expecting to start treatment within the next month but there are many support services to set up as I live in a very remote location and am unlikely to be well enough to attend the hospital for the necessary blood checks. I am already so weak that it is difficult for me to sit up for over 95% of my life. The treatment is expected to make me more fatigued and weak so I cannot imagine being able to travel the long 60 mile each way for hospital check ups during treatment.

Good Luck everyone. Remember to keep living a healthy life style. Vitamin E has now been highlighted as being a Cancer risk or causing Cancer to spread and there are concerns over other antioxidants. So please try to keep up with the research if you are taking any supplements!

Keep on fighting to get your treatment. Each and every one of us deserves to be treated NOW not later!

Keep Smiling or in my case Keep Twinkling.

Love and Hugs to you all.

Twinkling Star

XXxxxx

[art4949 in reply to TwinklingStar]

To Twinkling star

I agree they should have treated you before now. And when you were diagnosed with HCV they should have done a Fibroscan or at least an Ultrasound test to determine the condition of your liver at that time, since you have had this disease for so long.

Your concern over taking ribavirin is justified...Harvoni has a high success rate clearing the virus without ribavirin, however, if your liver is decompensated that might be why they are using Ribavirin.

harvoni.com/taking-harvoni/...

If you do take Ribavirin, make sure the clinicians know all the medications your are taking prescribed or over the counter, supplements ...also, let them know of any and all health conditions you have, for example, any thyroid problems, heart problems, or anemia.

Looking forward, you should bring in the new year HCV free if you are starting treatment soon.

⭐️🌟🌟🌟

[TwinklingStar in reply to art4949]

Hello Art

I was diagnosed shortly after the specific test became available for Hepatitis C. So lucky I spotted a tiny 1" square article in a Women's magazine at the Doctors' Surgery!

At the time they did not know I was suffering from Ehlers-Danlos Syndrome (EDS) and they gave me a liver biopsy. I almost died having it done. It caused so much pain it was impossible for me to take a breath. They went on a mad rush to get morphine and after they injected this I was able to breathe again.

Unfortunately, the normal fibroscan which takes measurements in kpa's is unreliable for people with EDS. The ARFI scan is reliable as the probe can be positioned to avoid blood vessels, ligaments, tendons, etc. Not all are in the liver but they can see on the screen and choose a Region of Interest (ROI) which makes the test so far more reliable for people with Connective Tissue Disorders.

I have checked on the Gilead web site and it would seem that because I have Cirrhosis the recommended treatment is to now include Ribavarin as Harvoni has not proved to be as reliable as they once thought!

Thanks for you informative response.

Love and Hugs

Twinkling Star

[art4949 in reply to TwinklingStar]

I am not sure, but clearing HCV also depends on the viral load before treatment being low (under 6million) and whether or not your cirrhosis is compensated or decompensated, when taking Harvoni with or without Ribavirin.

I think because Harvoni is so expensive, the NHS want to do as much as possible to increase the chances of achieving a cure for each patient...adding Ribavirin can improve the cure rate but it also increases the drop out rate from 0%using Harvoni alone to 2% drop out rate in some trials using Ribavirin.

It is good you survived the biopsy...Now for the cure, right?!

[Hidden in reply to TwinklingStar]

I too caught HCV via a blood transfusion in 1975. I really think it is adding insult to injury to wait for treatment until we are in a life threatening situation. That's not to say that I think others don't deserve treatment no matter how they got sick. The only way to eradicte this nasty disease is for everyone with chronic HCV to be treated ASAP then hopefully the chain of infection will be broken. We can talk all day about the politics of the pharmaceutical industry. The fact is that eradication is becoming possible, and it should be done. As for the criminal negligence which resulted in so much harm. Who to prosecute? Most of those responsible are dead or too elderly to try in court.

[ballie52]

They said on the Nice Web site that if you had prior Interferon treatment and failed and have cirrhosis you should get Harvoni and Ribaverin for 12wks..when I asked my nurse she said even with prior failure on Interferon with cirrhosis as I am genotype 4 then I only get Harvoni for 12wks on its own..I was told Ribaverin was not needed..hoping that's true..would hate for it not to work ..The Interferon left me with a destroyed thyroid and having to take thyroxine for life so hoping Harvoni puts an end to all this misery when I finally get treated.

Waiting is the difficult part as things don't get any better only worse but who really cares it's all about cost!

[TwinklingStar]

Dear Ballie,

They may be trying to avoid Ribavarin as you have other health problems. You would be better to check here regarding treatment:

hcvguidelines.org/full-repo...

For a host of other information you can check here:

hcvguidelines.org/full-repo...

If you have specific questions you can telephone Gilead which I think is free when you use Skype and they will direct you to how to submit any questions or help you require regarding treatment options, problems, etc.

Gilead Telephone: [phone]

I hope this will help rather than cause you extra stress!

Love and hugs

from Twinkling Star

[ballie52]

Thanks Twinkling Star..she did say to me that genotype 4 can only get Harvoni on it's own despite the fact that Gilead recommend that treatment experienced people who have cirrhosis should either have 12wks Harvoni with Ribba or 24wks of Harvoni. .I think it's a costing issue..although I was told that 12wks of Harvoni alone is enough to clear the virus despite having cirrhosis. .but I am just like Art having to sit and wait for my turn whenever that might be. .hoping not more than 6mths after all they are say cirrhotic patients should get treated now but that seems not to be the case!

[retwos]

I was lucky to get the treatment which worked and since have had a liver transplant, you have to be positive with your thoughts , it will happen for you n hopefully your final result will be undetected after 12 weeks n lots of blood tests , good luck

[cityman62]

Interesting debate this,I'm in Wales,and am not sure about other UK regions policy on this new harvoni/rib treatment.My consultant tells me my local Hospital/County has over £3 million to use up on this new drug regime before April so they are treating everyone here a.s.a.p.Starting with cirrhosis and working down.Its more money than the cancer team here have.Bear in mind that my local hospital is as starved of funds and short-staffed as,well,yours!As I understand it this money has been centrally allocated from the Welsh assembly,so the local health authority/Eton boys mob in Westminster can't use,abuse,steal,redirect it.

[art4949]

NHS in England was given £91 million to use to treat HCV patients earlier this year. I have no idea if there was a deadline for that...at least your specialist in Wales has given you the full picture. I do know that until NICE publishes the final guidelines for HCV treatment only those HCV patient with decompensated cirrhosis are being treated...Trust are working down their list...if you have compensated cirrhosis with a Fibroscan score of 12.5 you probably still be waiting indefinitely for your treatment...if you have HCV but your Fibroscan score is 11 well, until NICE publishes those final guidelines you do not get treated unless you go privately for now...or your condition worsens.

How will the Welsh NHS administer these drugs regimes without enough staff by April? Harvoni cures many strains of HCV...so, the Welsh are spending the money on a cure.

Lord only knows what happens to the money we hear is promised for things like HCV...who follows the money to see if it actually goes direct to NHS Trust to give directly to those who are buying the drugs given to patients with HCV?

So, as an example, if the NHS direct £12million to a hospital in Surrey for HCV treatments... Does that hospital then spend £12 million directly on the drugs needed to treat all HCV patients on their list at that Trust?

The Specialist and liver specialist nurses and procedures/costs for looking after those HCV patients is already in place so that those costs should be covered already. Does anyone actually know why so much money has not improved treatment up take...? There is no transparency? How quickly does the government make good these type of promises?