We are one year later the World Health Organization resolution about hepatitis, where we are now?

Well, it’s wonderful that we have the resolution, unfortunately there has not been quite as much progress as I would have liked and that is partly because WHO is a big organization and it takes time. One of the things that the resolution mandated was the development of a global strategy for the prevention and control of viral hepatitis and for that to happen there needs to be a unit in Geneva to do that because the hepatitis work that WHO has done in the past has been diversified throughout the organization, one person doing a little bit here and another person doing a little bit there and that’s actually in a way why it has never been properly tackled in my view.
Now that is going to be it needs to have a coordinating unit, but clearly recruiting new people, particularly at a time when the financial constraints makes it hard. So it’s going a little bit slower and obviously the unit is also needed to coordinate World Hepatitis Day, because now that’s an official day, it’s up to WHO to organize it and the World Hepatitis Alliance is very ready to help them and has offered our services to do that but, again, it’s a question of it perhaps being a little slower than we would like, but at least we are beginning to move in the right direction.

Can you provide us a global picture about hepatitis C?

It is a very big problem globally hepatitis C with between 130 and 170 million people chronically infected.
Somewhere around a third of a million deaths a year and it’s everywhere: it’s not like some disease which is concentrated in specific bits of the world. Almost every single country has a problem with it where at least 1 in a 100, if not considerably more, are chronically infected and one of the problems is that wherever you look most of those people are undiagnosed and so they are the ones who are most likely to develop end-stage liver disease, because they would not have had access to treatment that could stop that.

How can we reach people that are not informed about their status that are undiagnosed?

That’s exactly the reason that WHO agreed to hold a World Hepatitis Day.
When we set out on the route to trying to get this to happen, we were told there are many too many Days, there will never be another one officially endorsed by WHO, but we spoke to the 193 Member States and convinced them that this was an exceptional case.
At the meetings at the Executive Board and at the Assembly that I attended, it was perfectly clear from what each country was saying that they wanted the Day for two reasons, diagnosis and prevention, because that’s what’s needed, so clearly one day won’t be enough, but the Day on July we will at least be the focal point for it.

You have used the word “chronic” many times: from your point of view, what means living with a chronic condition?

It affects your entire life. I lived with hepatitis C for 20 years, for most of those, I didn’t know that I had it. It was only after I was diagnosed that I realized that explained why I felt tired all the time, why I had little enthusiasm for things and it really affected my ability to perform throughout my life. And then, once I was diagnosed, there was the stigma attached to it, because certainly in the West, although this is not true elsewhere, hepatitis C is stigmatized as a drug users’ disease. But, in fact, there are many routes of transmission. As I say, this is not true in other parts of the world: nosocomial infection in hospital or in healthcare settings generally is much more common that intravenous drug using in most of the world. So, certainly my experience of feeling stigmatized, not wanting to tell people, feeling isolated, perhaps not that for going and looking for support, and the fact that you have it day after day, after day: there is also something about having a chronic infectious disease that is perhaps a little different from having just a normal chronic disease. I did treatment because I was worried about the state of my liver. I was already cirrhotic when I did hepatitis C treatment, but actually, after it had worked for me and the virus had been eradicated, the first time I saw on my doctor’s request for bloods “no known infection risk” I was so elated, so overjoyed: at that time I realized that subconsciously I had been really concerned about being infectious to other people, to the people I cared about and the relief of seeing that was enormous.

We are at the beginning of a new era regarding new treatments, there is a lot of noise about protease inhibitors and hepatitis C, before speaking about the future, looking at the current therapies, what are the unmet needs or the limits of the current therapies?

The problem with the current therapies is that they are not very effective or not effective enough against genotype 1, 4, 5 and 6, they are effective for 2 and pretty effective for 3, but the others are not. I have in my office two people and also a third, who is actually not in the office but was a trustee, who tried treatment, it did not work for them because they were type 1 and having no other options their liver disease progressed. All three have had to have liver transplants and that’s a real problem, because there are not enough livers for transplant and there are increasing numbers of people needing them. So, there is a huge unmet need for people who have either decided they don’t want to do treatment because the odds are not good enough, or for people who tried it and for whom it hasn’t worked.

What are your expectations about new treatments?

That they are going to make an enormous difference.
One is the increased efficacy, but also the shorter duration: part of the problem is I actually got very sick on treatment and had to stop after eight months, but it worked, it had worked by then. It’s very clear: six months is different from a year. If you got to do it for a year, certainly by the time I had to stop. I was getting seriously exhausted by it, it’s the relentlessness of it of feeling pretty ill day after day after day: being able to shorten that six months will make an appreciable difference.
The fact that people are much more likely to have a successful outcome, people are prepared to put up with side effects. It’s much easier, if you really think this is going to work. So, this is the beginning of a new era, a different class of drugs, the direct-acting antivirals, and I think one of the most exciting things is the fact that this is one of the disease areas where we have absolutely the most investment from the pharmaceutical industry and there is huge competition, so there is an awful lot going on and I am sure you have seen the level of excitement at this Conference with so many new drugs.

New drugs very often means high prices, we are at the beginning of a new that is also characterized by a financial crisis, what is your position about the issue of price?

Yes, this is very unfortunate that these are coming out now, at this particular time in the middle of a financial crisis. The thing about price is that this is a complicated issue. On the one hand, it is absolutely essential that the people who need these medicines can afford them, but at the same time there needs to be the financial incentive for pharmaceutical companies to go on investing. Part of the reason that we have such a lot of drugs, and developed so much competition that is speeding everything up is because of this model. You know, people talk about the pharmaceutical industry are very bad: we should have a different model to do it, we should perhaps do it in universities, or we should have free intellectual property. The thing is, well, that just doesn’t work in the same way that this does in terms of getting focused huge investment into an area, and that brings on new and better drugs and the point is we need them: we need the investment to bring us drugs that will be more effective, have less side effects and that you need to take for a shorter duration. So, my answer is this is a complicated question.

Are you working with pharmaceutical companies in order to set up studies related to quality of life or other psychosocial issues related to new treatment?

Not at the moment, we have done that, the NGO that I run in the UK has been doing some work on this, but the Alliance hasn’t been because the Alliance at the moment is a very small organization. What we are committed to doing first of all is capacity building with our members, because what we need is credible national strategies in every country, as a first, a fast requirement. After that, we can spread out and do more, but there are very few countries now that have proper national strategies and someone to lead them in place. So, we are working on that primarily, and also clearly on awareness, as well as working with WHO around a global strategy that will help inform national strategies: we are not this enormous organization that can be doing that kind of thing, working with the drug companies in that kind of detail, yet.

So, once again, scientific breakthrough is crucial but access is the gatekeeper on the territory?

Of course, there is no point in having scientific breakthroughs if – you know? – less than 1% of people can access these wonderful breakthroughs, but how you make it possible for the maximum number of people to get access is a complicated question. If you look at HIV, interesting work has been done and there have been a range of model and that has allowed access and that’s what we are going to have to look at in hepatitis C and we are going to need to look at it quickly.

Articolo presente in – HAART and correlated pathologies n. 13 –

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