Perhaps you’ve already tried interferon and ribavirin and it didn’t work for you, or maybe you’ve never done it and are wondering if now is the time? The decision to do treatment has always been a difficult one for people with hep C, but it has now become a lot more complicated with a whole range of new and more effective drugs on the horizon.
We are increasingly getting calls on the helpline asking for our thoughts on how to weigh up the different options and here we offer a basic guide that we hope will be helpful for you to make the right decision.
The first question to ask yourself is – do you need to do treatment now? The major factor in this, but not the only one, is the state of your liver.
Do you have cirrhosis? If you do then you need to seriously consider doing treatment now as, although progression to decompensated cirrhosis (when you develop a serious range of symptoms like ascites, variceal bleeding or encephalopathy) is almost impossible to predict, once you do progress that far, any treatment is unlikely to be on offer because it’s considered too dangerous and your doctor will be considering liver transplant.
If you don’t yet have cirrhosis, is your liver deteriorating at a significant rate? For example a recent biopsy (still the gold standard for assessing actual liver damage) might show that you have progressed to bridging fibrosis (Metavir score F3) from just some fibrosis (F1 or F2) four or five years ago. You would then need to think about whether you can wait for new, more effective and possibly more tolerable drugs (i.e. with fewer side effects), but you have to bear in mind that generally speaking, treatment is less likely to work the older you are and the more damaged your liver becomes.
Do you have any other reasons for feeling strongly that now is the time for treatment? For example:
- If you are a woman, do you want to have children very soon and don’t want to run the risk, even if it is fairly small, of passing your hepatitis C to them at birth?
- Do you have a lot of symptoms that make your life really difficult, perhaps even unbearable? Some of the common symptoms of hepatitis C (e.g. depression, poor sleep and digestive problems) can often be effectively managed, however, extreme fatigue can be very hard to manage and can seriously lower your quality of life.
- Do you hate having an infectious disease, either because of the way it makes you feel about yourself or because of the discrimination or stigmatisation you may come up against (which shouldn’t happen but still does)?
- Are you getting to an age where physicians might not want to offer you treatment? At the moment 70 is generally thought of as the cut-off age, although this might change with the new drugs and increasing life expectancy?
- Do you have what you feel is an ideal window in your life right now, for example a supportive family, an understanding boss or an undemanding job, that you think might not be the case next year?
So, if you are considering treatment right now, this is the current situation:
Genotypes 2, 3 and 4
Pegylated interferon and ribavirin is the current treatment and is likely to remain so for at least the next couple of years, with success rates of up to 90% for genotype 2, 80% for genotype 3 (usually for 24 weeks of treatment) and 50% for genotype 4 (for 48 weeks). If you have done treatment before without success, you can be retreated with interferon and ribavirin but your chances of success a second or third time around will be lower and it is likely to be taken over a longer duration.
Depending on how you responded the first time, your best chance would be if you initially went clear but then relapsed (meaning the virus came back once you stopped treatment). You may also have a better chance of success second time round if you feel that you could have done it better first time. For example, you might have had little support and as a result missed doses, or perhaps there were other factors that made adherence to completing the full course impossible for you.
There are two new drugs available, you will only take one of them as they are both very similar but they do need to be taken in conjunction with pegylated interferon and ribavirin making a total of 3 drugs that you would take for treatment. The addition of the new drugs, Telaprevir (brand name Incivo) and Boceprevir (brand name Victrelis) will increase the current success rate for genotype 1 from 40 -50% to around 70% (for 48 weeks treatment) but they can potentially add significant side effects to those already experienced with interferon and ribavirin. However, the good news is that, as well as the big increase in success rates, if you respond quickly, you may be able to shorten treatment down to just 24 weeks.
They are already available in parts of Scotland and a fair few hospitals in England at the moment. This ‘post code prescribing’ is not supposed to happen and The Hepatitis C Trust is working hard to stop it, but the drugs are expensive and so in the current economic environment commissioners are trying to avoid paying even though they have a legal duty to do so.
The treatments mentioned above are not your only options. If you want to do treatment now, because there are so many other new drugs in development, clinical trials are happening all over the UK. Some of the trials will still involve interferon and ribavirin in combination with new drugs, but equally it has recently been shown that very good success rates can be obtained without interferon and so there are also trials being carried out in the UK that do not include it.
Unfortunately, it is often hard to find out about these trials unless they are happening at your hospital so the Trust has agreed with the UK Clinical Research Network that we will be informed of all upcoming trials which we will post on our website. If you see a trial that you would like to take part in you can then ask your consultant or your GP to refer you to the hospital that is doing the trial, no matter where it is in the country.
Trials are a good way to get new drugs well in advance of their general availability. However, there are possible drawbacks. Trials often have small numbers and also strict inclusion criteria (for example only people who have not done treatment before or who are not cirrhotic), depending on what the drug company is trying to prove, so you may not be able to get on the one you want. Also, trials are designed to test different ideas and so have different ‘arms’, each one testing a different dose for example. You might be unlucky and get assigned to the ‘arm’ that does not receive what turns out to be the most effective dose. It is also possible that you might experience a rare side effect that has not been seen in earlier trials which have only been carried out on small numbers of people.
If you do not need to do treatment now, you need to balance what is on offer now against what will be available in the future. We are very lucky in that there are probably more drugs in development for hepatitis C than for any other disease aside from cancer as a whole.
Unfortunately it is extremely hard to guess how soon any of these new drugs will become available, or even if they will, because many drugs turn out, even quite late in development, to be less effective than thought or to have unexpected side effects.
This means you will have to balance the increased effectiveness and likely lower side effects of the new drugs against the fact that the drugs might take longer than anticipated to become available by which time you will be older and might have developed other diseases, or your liver damage might have advanced to cirrhosis, either of which might mean that treatment is either less effective or not available to you at all.
Given the difficulties in predicting the future, in broad terms, this is what we currently expect to happen:
- Interferon and ribavirin will continue to be used for genotypes 2, 3 and 4 and with the addition of Telaprevir or Boceprevir for genotype 1 for the next two to four years.
- The new protease inhibitors (the same class of drug as Telaprevir and Boceprevir) will become available together with the first drugs from other classes (such as polymerase inhibitors, NS5A inhibitors and cyclophilin inhibitors and there is also a new type of more “tolerable” interferon on the way, which may increase success rates to about 90% across all genotypes.
- Perhaps five years away we will see the first treatments generally available that will not include interferon at all, although they may still require ribavirin, which for the moment at least, appears to be the most effective drug in preventing relapse.
In the meantime, we are continually updating information on our website and will continue to keep people informed via our newsletter and email updates or don’t hesitate to call us on the helpline for further information - 0845 223 4424 or 020 7089 6221.