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IN TOUCH – Drug treatment for Macular Degeneration

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TX:Ìý 23.01.2018Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý CHERYL GABRIEL

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White

Good evening.Ìý Tonight, two pieces of potentially good news today, provided the small print doesn’t get in the way.Ìý That would be particularly unfortunate since we should be one step nearer a world library of large print, audio and braille books.Ìý More about that later.Ìý

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But we start with the news that people experiencing early problems with their vision, through some forms of Macular Degeneration, should now be able to get treatment sooner than in the past.Ìý Sounds like a no brainer, doesn’t it, that the quicker you get treatment for almost anything the better your chances of a good result.Ìý And yet, people with eye problems are often told – you can’t have that yet, your sight’s too good.Ìý Well this has certainly been the case with Macular Degeneration, the commonest form of sight loss amongst older people in the UK.Ìý There are two types of MD – dry, for which there is currently no treatment and wet, where drug treatment is possible but often available too late.Ìý

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But now new guidelines from NICE – the National Institute of Health and Care Excellence – are changing that.Ìý Cathy Yelf, who’s Chief Executive of the Macular Society and was closely involved with the drawing up of the guidelines, told me what they’d changed.

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Yelf

The guideline says quite clearly that a patient who is seen by perhaps their optometrist or optician in the high street with suspected Wet AMD should be referred that day to a macular specialist and they should be seen and treated within 14 days, if they need treatment.Ìý And that is a very clear and very welcome reinforcement of the guideline that has always been there really from the Royal College of Ophthalmologists.Ìý But this guideline really sets that out.Ìý And there was lots of evidence to support that recommendation.Ìý

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And the second very important development is that NICE says that it is clear, from the evidence, that it is clinically effective and it is cost effective to treat people with very good vision who have macular disease and perhaps earlier than they’ve been treated so far.Ìý

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The sticking point is this phrase – depending on the regimen used – and that is because NICE has done some very complex health economic calculations which says that it’s probably too expensive to use the standard drugs to deliver this treatment for the better vision but it is cost effective to use Avastin, instead of the two normal drugs – Lucentis and Eylea.Ìý And as you may recall Avastin is controversial because it’s not – it’s a licensed drug for cancer treatment but it’s not actually licensed for use in ophthalmology.Ìý And there is a legal dispute around under what circumstances it can be used for eyes.

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White

So, what’s the way round that because if NICE is saying this is only cost effective, if, for example, you use Avastin but some trusts are saying but we can’t use Avastin because it’s not licensed, what the answer to that little puzzle?

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Yelf

Well it may be that it will be tested in court but I mean we believe that some clinics are already using Avastin for these patients and they haven’t been challenged over that and we welcome that, we think that these patients need treatment, the clinical evidence is really clear that it is much better to treat these patients when their sight is still very good.Ìý And so, we would support that use.

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White

But who is going to make that decision now?Ìý I mean I suppose what I’m really asking is how can patients influence this; how can they make sure they get the best chance of treatment quick enough to maintain their sight at a better level?

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Yelf

Well we would recommend that patients are proactive and if somebody is saying to them that they can’t be treated they need to get hold of a copy of the guideline, they can do that from our website, and they can also download our frequently asked questions and they go off to their eye clinic and they say NICE says that this is effective and cost effective to treat me with this drug.Ìý And they will need to – really, I think to demand a sensible answer as to why that can’t happen.

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White

And if they still say no?

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Yelf

I think you have to go through the processes.Ìý I mean we would finish up with ombudsmen I think, looking at it, and it is a very frustrating position that the legal situation over this is so confused and so disputed and people do not agree.Ìý And that is why I think really, in the end, we would quite like a legal decision on whether this is appropriate use – licensed use or not.

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White

So, let’s just take a more normal case where all these things don’t necessarily arise.Ìý My question really is – if you can now have treatment earlier, if it’s spotted early enough, how do you make sure it’s spotted earlier enough, I mean are there really signs because this is based, to some extent, it used to be based on whether your sight was good enough to drive, wasn’t it, so can you actually know that you’ve got a problem and how do you make sure other people know that you’ve got a problem?

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Yelf

Well increasingly, fortunately, there’s better equipment available in high street optometrist practices now.Ìý And we always recommend, and everybody in the eye care business recommends that people have regular eye checks at their local optician.Ìý And they can use this equipment to look at the back of the eye and see if there are the early signs of Macular Degeneration because it very rarely comes out of nowhere, there is usually a sign that somebody is at risk of developing late stage Macular Degeneration.Ìý And those people then can be taught and advised on how to monitor their vision.Ìý The key thing is to react quickly if you have some of the early symptoms.

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White

Such as, what are the things to watch out for?

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Yelf

Usually distorted vision, if straight lines become wavy or things suddenly become very small and distorted, then that’s an early sign that you may have some fluid in the retina, which is distorting your vision.Ìý And that’s a very important sign that you need to act on quickly and go and see your optometrist, either the same day or certainly as practically possible.

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White

To get back to this cost effectiveness argument though, to end, is this going to reopen the whole debate about Avastin and Lucentis, assuming that it ever went away?

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Yelf

Yes, I don’t think it ever has gone away and I think it is likely to start this again.Ìý There are some clinics that will treat patients who have the better vision and we have been asking many more clinics to do that and it may be that actually this guideline will give them the confidence to do that.Ìý And so, let’s be optimistic at this stage that actually this is going to be good news for patients and more clinics will be emboldened to treat patients with the better vision.

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White

So, the guidelines came out today, what are the professionals saying about it?

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Yelf

Well interestingly enough both the Royal College of Ophthalmologists and the General Medical Council have both seen it as an opportunity really to revisit the Avastin issue.Ìý So, NICE have been very open about the cost effective of Avastin compared to the licensed drugs.Ìý And the Royal College says this is now an opportunity for the NHS to make considerable cost savings.Ìý And the GMC have really helped them in this respect by issuing their own statement, making clear that doctors do not need to fear sanction by the GMC if they give Avastin in good faith.

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White

So, is this further than the General Medical Council has ever gone before on this?

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Yelf

Yes, I think it is and I think it’s intended to have consequences, we don’t quite know what the consequences are, it could be that the NHS will use more Avastin in future, it could be that the pharmaceutical companies come back with a lower price for the licensed drugs or it could all still finish up in court.Ìý I think patients can be reassured though that Avastin is widely recognised as a drug that is equivalent in safety and effectiveness as the other drugs and that is important for patients to remember, whatever happens, I think.

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White

That’s Cathy Yelf of the Macular Society.

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Your reactions please, details at the end of the programme.Ìý

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But you have been contacting us about a number of recent items.Ìý For example, the idea that retailers and advertising companies should come under more pressure to make their ads accessible to blind people by using, for example, audio description.Ìý As so often, a mixed reaction.Ìý Gail Fagan’s keen, she objects to having to ask her husband what’s being promoted when ads don’t even mention the name of the product or the company that’s being advertised.Ìý She wonders how people who live alone manage.Ìý

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John Fullwood, though, says when he’s asked whether there are any advantages to being blind, top of his list is the fact that he doesn’t have to put up with seeing all those adverts posted on billboards, thus avoiding being brainwashed by commercial companies trying to sell him things he doesn’t need and doesn’t want.Ìý

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Sue Marshall and Anne Farthing were just two of the many people who contacted us to say how much they’d enjoyed hearing Fred and Etta Reid talking both about their campaigning on behalf of blind people and their long and happy family life together.Ìý Anne was taught history by Dr Reid at Warwick University and said he was inspirational.Ìý And Sue said how refreshing it was to hear the Reids just getting on with things without too much naval gazing.Ìý

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Here’s an example:

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Fred Reid

One of the questions they ask you over and over again – it must have been awful not to see your children.Ìý Now of all the things that there are lovable about children, millions of them, the things they say, the things they do – yeah of course you’d like to see them but they just go on about this one – as though there’s some sort of permanent sadness when you’re actually full of the joys of parenthood.

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Etta Reid

And people used to tell us how beautiful they all were.

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Fred Reid

That’s right.

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Etta Reid

They were all fair haired and blue eyes.

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Fred Reid

You don’t pine and think oh you know I wish I could see them.Ìý Fleetingly you might think that.Ìý

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Etta Reid

Well we could imagine what they looked like.

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White

Fred and Etta Reid.Ìý And it was great fun to do the interview.Ìý If you missed it then it’s just one of many podcasts which you can download from our website, including tonight’s programme of course.

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Now, despite the scarcity of hard copy books in a form that visually-impaired people can actually read, around 5% of books published in the UK, it’s still been frustratingly difficult to get books from other countries because libraries in the receiving country would have to go through the whole process of getting copyright permission from scratch.Ìý Four years ago, we thought we’d solved this problem with something called the Marrakesh Treaty, where people who signed up said copyright obtained in one country would apply abroad as well.

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Well that was four years ago but only now has the last hurdle been finally cleared for it to be ratified by the EU.Ìý Well Fazilet Hadi has been closely involved in the RNIB’s campaign to secure this treaty and although there may still be some haggling ahead she’s confident that this is an important milestone.

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Hadi

The Marrakesh Treaty is an amazing milestone really in the rights of blind and partially sighted people worldwide.Ìý Probably 10-15 years ago people started wanting to create a world accessible library, with the idea that why should someone who’s produced a braille book in one country not be able to benefit from it in another country.Ìý And it took us a long time and RNIB and other organisations across the world, under the banner of the World Blind Union, lobbied publishers, lobbied the World Copyright Organisation and we found ourselves in 2013 actually reaching that milestone of the potential to have a world library of accessible titles.

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White

Can I just establish why you couldn’t do it before because organisations, like the RNIB, would do some swapping with agencies, what was the thing that was stopping, if you like, full steam ahead swapping?

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Hadi

The thing that stopped us having a world library without this treaty being in place with the fact that a lot of publishers would only give you permission for a particular geography, a particular country and then you’d have to go back to them for permission if you wanted to share that book with another country and it just becomes too complicated.Ìý So, what happened was a lot of our books, that publishers let us publish in the UK, they wouldn’t have necessarily let us share them across the world.Ìý

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White

So, did that mean that you, for example, libraries would have to spend a lot of time just checking out copyright that had already been checked out by the original country?

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Hadi

Exactly.Ìý If you were going to do it you would have to go to the publisher, get the permission, per individual book, which I’m sure you can see would be just a very expensive process.

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White

So, what will this enable blind people to do which they couldn’t do before?

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Hadi

Well, the really exciting thing is for the 280 million blind and partially sighted people across the world, and obviously a lot of those are in developing countries which have a lot less access to books, it suddenly opens the door to people being able to access hard copy braille, audio, large print titles, that might not have been produced in the country they live in.Ìý Now there’s still a lot of work to do to make that a reality because once the treaty’s been fully implemented in each country then the libraries or the organisations who are trusted to do this will have to begin to talk to each other about how they create that pool of books and how they share them.

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White

Right, we’ll come back in a moment to what this means specifically in the UK.Ìý But also with us is Mary Honeyball, who’s a Labour MEP and member of the European Parliament’s legal committee.Ìý Just explain the significance of last week’s vote and where that leaves us.

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Honeyball

Well last week’s vote was the final ratification of the Marrakesh Treaty, so it is now EU law.Ìý It’s been through all the process.Ìý So, that was what actually happened.Ìý But of course, there is a real concern now about what will happen with Brexit.Ìý There are quite a lot of treaties done the same way as the Marrakesh Treaty and we’re not at all certain whether it will become part of UK law if and when Britain leaves the EU.

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White

The plan is to have this repeal bill, which means that a lot of the law will pass automatically into UK law.

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Honeyball

Some of it will.Ìý A lot of it will be up to ministers to make decisions about.Ìý This is one of the big concerns about the EU withdraw bill, that quite a lot of important things will not be subject to parliamentary scrutiny but will be made by ministers and it would be tragic if the Marrakesh Treaty was one of those.

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White

Have you any reason to think it will, I mean is there any evidence that it might be?

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Honeyball

Well we don’t have evidence on any of this because we’ve never left the European Union before.Ìý But of course, it’s a massive job.Ìý The Marrakesh Treaty, as we’ve heard itself, was a massive job but bringing EU law into UK law, 40 years’ worth of it, is huge, which is why these clauses which have become commonly known as Henry VII clauses are in the withdraw bill to allow them to go through more quickly, without going through parliamentary scrutiny.

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White

Fazilet Hadi, what’s your understanding of that because presumably you have looked at it, you are talking about this as if it’s a done deal?

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Hadi

Well, Mary’s right to be cautious and I suppose you can’t guarantee what’s going to happen, but at the moment, I feel pretty confident that these provisions will pass into UK law and we will still have them after we leave the EU.Ìý Partly I feel confident because actually the UK government’s got quite a decent record on copyright exemptions for blind and partially sighted people.Ìý And of all the things they could decide not to do, I might be being naïve, but I don’t think this would be one of them.

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White

So, you’re just saying real politik, as it were, it wouldn’t look good to appear to be denying blind people access?

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Hadi

I don’t think so and to be fair I think we had exemptions to copyright legislation within the UK probably years before other countries.Ìý So, I feel that the track record in this country is quite positive.

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White

Assuming this does become a reality, Fazilet, who benefits though because surely with the developments in electronic books more and more people are accessing their books electronically, with developments like scanning they’re using services such as Kindle with their smartphones.Ìý That figure of only 5% of books in an accessible format’s way out of date isn’t it?

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Hadi

You’re absolutely right, a lot of people are accessing digital.Ìý I think a lot of people aren’t and there are some areas where actually a hard copy title would be a preference for people.Ìý So, some of the ways in which UK citizens will benefit from the Marrakesh Treaty and the world’s library I think we’d have access to more foreign language titles, so if you think about our minority language communities we could never produce enough books in this country for people who speak other languages but actually we would be able to give them access to books in their own language.Ìý If you think about students learning, a lot of other countries do produce text books in English, so they might want access to that.Ìý Particularly I suppose if there’s diagrams or tables or things they need to study under their fingers in a bit more detail than just listening to the digital format.

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White

Does this now mean that libraries won’t have to do all this work when these books come over?

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Hadi

It will be sharing files, electronic files, but what it’ll mean is that at the moment we probably have the inefficiency of many countries producing the same title and it’ll mean as we get cleverer and our library systems can talk to each other it’ll mean that we also are more efficient, less duplicative and hopefully more money can then go into producing more books.

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White

And what about all the other people who are concerned about this, have to worry about this, we’re talking about publishers, we’re talking about the agents of authors – are they all on board for this?

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Hadi

I think they were very, very sceptical and scared a few years’ ago.Ìý I feel that they’re less anxious and I think the idea that lots of blind people will go around sort of releasing books into the wider public, probably those fears have subsided, just because the reality hasn’t come to pass.

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White

That’s Fazilet Hadi of the RNIB and before that we heard from MEP Mary Honeyball.

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And that’s it for tonight, we welcome your comments and your queries.Ìý You can call our action line for 24 hours after tonight’s programme on 0800 044 044.Ìý And you can email intouch@bbc.co.uk or click contact us on our website.Ìý From me, Peter White, producer, Cheryl Gabriel and the team, goodbye.

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