Â鶹Éç

Downloaded from www.bbc.co.uk/radio4

Ìý

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE Â鶹Éç CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

Ìý

Ìý

IN TOUCH – Covid and Sight Loss; Retinitis Pigmentosa Research

TX:Ìý 26.07.2022Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

Ìý

PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý FERN LULHAM

Ìý

Ìý

White

Good evening.Ìý Tonight, could covid be masking eye damage with other more obvious symptoms?Ìý In a moment we’re going to be talking to two patients who think this may have happened to them and seeking some professional answers.Ìý And hopes that newly funded research could eventually restore some vision for people with Retinitis Pigmentosa, who previous techniques haven’t, so far, been able to help.Ìý Is it time, perhaps, to allow people to be more hopeful?

Ìý

Clip

What I am seeing now in the science overall is there are incredible advances, things that might not point us to a specific moment in time in the next 10 years where that’s it solved but where you can see the groundwork being made.

Ìý

White

Keith Valentine, Chief Executive of Fight for Sight.Ìý More from him later.

Ìý

But first, almost a year ago, a senior optometrist warned on this programme that some eye problems could have been caused or aggravated by covid but missed or underestimated because of other clinical problems.Ìý But he said we still needed more evidence.Ìý Well, today, we’re joined by two people who feel this could be the case for them.Ìý First let’s hear from Paul Bacon, he’s a criminal lawyer.Ìý Paul, you did already have some vision problems before covid, just tell me about your situation just before covid struck.

Ìý

Bacon

Yes, I had Retinitis Pigmentosa, which I’ve had from my 30s.Ìý The peripheral vision goes and gradually works its way across your eyes until it all goes.Ìý And it had got fairly tight when I had covid and I had covid for about two weeks, very ill but not in hospital but really ill.Ìý And then when I was able to go outside again and start walking my dog, I realised I couldn’t see the road, I could see the tree tops but not the road and it was like a fence had been built halfway up my eye.Ìý I obviously realised there was a problem and it’s straight after covid and I contacted my optician, they sent me to the hospital, the hospital then arranged all sorts of tests and the eye then went altogether, so I’ve no vision at all now in my right eye.

Ìý

White

What response have you had when you’ve suggested that your sight is worse as a result of covid?

Ìý

Bacon

Negative.Ìý I think most – everybody I’ve spoken to dismissed it as a possibility.Ìý But I think the coincidence is extraordinary.Ìý I had my Retinitis Pigmentosa problems but no other significant problems in my right eye, it was no different to my left eye.Ìý And then straight after covid, it suddenly deteriorated dramatically.

Ìý

White

You say the sight in one eye has gone altogether, what about the other one, what state of vision have you got at the moment?

Ìý

Bacon

Very little.Ìý If you think of looking through a hole in a polo mint, that’s about the vision I’ve got, probably 2%.Ìý But fortunately, through it it’s clear, so I can still read and I can still write, so that’s a help.Ìý But obviously walking about, bumping into things is common and I have a white cane to let other people know that I have a visual problem.

Ìý

White

Stay with us because also with us is well-known poet, former children’s laureate and current presenter of Radio 4’s Word of Mouth, happily now back on air, Michael Rosen.Ìý I believe you had, as far as you knew, no sight problems before covid?

Ìý

Rosen

That’s right, Peter, yes and then when I woke up after 40 days in a coma, I kept complaining about the fact that my left eye was blurred, that I couldn’t see probably and everyone was completely puzzled at the time but they weren’t making a connection between the fact that I had what are called micro-bleeds, tiny little aneurysms in my brain, which appeared to have knocked out both my optic nerve of my left eye and my left auditory nerve, my hearing, in other words.Ìý And we know, now, there is a link between covid and affecting the vascular system, our blood vessels, because we have a little system in our bodies that prevent our blood clotting in our blood vessels and covid seems to know out the cells that do that with the result that we get clots and tiny aneurysms in our capillaries and in my case, in my brain and also in my toes but then, as you know, I don’t see with my toes.

Ìý

White

No.Ìý Now as many people will know you were very seriously ill with covid, indeed you mentioned the 40 days of coma, when it was realised that you might have developed eye problems because obviously you had other things which were really concerning people more?

Ìý

Rosen

Well, the consultant says that when I was in intensive care, in the coma, that when my eyes were open, my left eye was, what he called, blown, in other words it was dilated and they did think, at one point, that I’d had brain damage but the eye was completely dilated and the eye was unblinking.Ìý So, there was some damage there, they knew almost immediately.Ìý But my vision, as I say, I complained about it almost immediately, as if it was their fault, you know, poor people.Ìý

Ìý

White

But like Paul, in a way, you felt that they weren’t making the connection?

Ìý

Rosen

Not to start off with but since then I think they have.Ìý Doctors work separately from each other, so an optometrist is not necessarily desperately keen to know what the cause of this wonky eye is, this eye that’s not working, they just get on and deal with, in my case, there was glaucoma there and thought that the sight would come back if they dealt with the glaucoma but it hasn’t happened.

Ìý

White

Well, we have an optometrist with us.Ìý Just before I bring him in, can I ask you both, quickly, what is that you want people to know as a result of your coming on the programme?Ìý Paul first.

Ìý

Bacon

Well, I want people to know that I think there is a connection.Ìý Obviously, it sounds as if there’s some developing work that is starting to show that that is right.Ìý The reaction to me, when all this happened, it’s about a year and a half ago, was to be very dismissive of any notion which… I’m not stupid, this is something that has actually happened, it’s a consequence of covid.

Ìý

White

And Michael, same question really, what do you want people to get from this?

Ìý

Rosen

That covid cause clots, clots in tiny capillaries cause little bleeds, if there are bleeds in the brain then we might expect them to cause damage to eyes, ears and all sorts of other things.

Ìý

White

Let me bring in the professional I mentioned at the beginning of this programme, Dr Peter Hampson, Clinical Director of the Association of Optometrists.Ìý Now you warned of this problem at the time, what’s your reaction to Paul and Michael’s evidence and what’s happened to them?

Ìý

Hampson

I think the first thing is that what we’ve heard is entirely consistent with what we thought might happen.Ìý So, as Michael’s quite rightly said, covid causes inflammation of blood vessels, it can cause blood clots and if those clots happen in very small blood vessels in the brain or in the eye, we get these sort of effects.Ìý So, retinal tissue, eye tissue, the sort of inner lining is really very similar to brain tissue in how it’s made and if you starve it of oxygen, deprive it of a blood supply, unfortunately it stops working properly.Ìý And that really fits with these issues that we’re hearing described here.

Ìý

White

At the time, you said the evidence wasn’t yet complete enough to give definite answers to this connection with eye disease and how common it was, are we any nearer to knowing all that now?

Ìý

Hampson

We’re a little nearer, I still think the evidence is quite patchy but there are some studies, quite big sort of cohort studies, into the impacts of the retinal vascular changes, occlusions, so blocked blood vessels in the eye in covid and post-covid infection.Ìý And although science hasn’t got to the point where you can say it’s absolutely linked; it’s starting to look pretty – pretty firm that there may be quite a clear causative effect from it.

Ìý

White

And how will that help if we know all that?Ìý I mean can we stop it?

Ìý

Hampson

Well stopping it might be difficult because we’ve got to treat the underlying inflammation in the first place.Ìý The treatments will help.Ìý What we can do with some of these conditions though is pick them up quicker, it depends on which bit of the eye is affected but if something’s been shortly after covid and there’s some inflammation or there’s a blocked blood vessel, the quicker we get that looked at, the quicker we start trying to put some treatments in place, the more chance we’ve got of fixing it.Ìý But, as I say, because it’s a bit like brain tissue, if it’s been deprived of oxygen for a while, dependent upon when it’s picked up, it can be very problematic and very difficult to fix afterwards.

Ìý

White

Covid is still common, of course, but cases seem, on the whole, less severe.Ìý Do we know if this lessening severity, as a result of vaccination and various other element of treatment, is having an effect on the connection with eye disease or the severity of eye disease?

Ìý

Hampson

Not yet.Ìý The problem has been that all along we’ve had this lag with the data, so we’re getting data now and following up cases from the early cases of covid.Ìý But as the later cases have come through, and as you quite rightly say, hopefully less severe, we haven’t got to the point where that data has fully been processed yet.Ìý Again, it will come back, to some extent, if there are pre-existing problems and those who are most at risk of severe covid, are also going to be more at risk with sort of vascular conditions and blood clotting conditions.

Ìý

White

But the message, presumably, is if you’ve got something that seems different do say so, make a fuss?

Ìý

Hampson

Absolutely, go to your optometrist as your first port of call, explain what the problem is, when you book the appointment, as well, explain that it’s not just a normal sight test, that you’ve got a problem, that will really help them to make space in the diary, book an appropriate appointment, so they’ve got time for investigations, they’re already sort of pre-thinking about what they might need to do, rather than just turning up expecting a normal sight test and then maybe struggling for time to do all the bits and bobs that they need.Ìý So, it’s really important, when booking an appointment, to say I’ve got this problem, so they can really plan how they’re going to look after you in advance properly.

Ìý

White

Paul and Michael, you’ve both been listening to Peter Hampson there, any comments you’d like to make?

Ìý

Rosen

If I could just come in there, Peter, yes.Ìý I was very early on in the pandemic, in March 20020, and they were only just discovering this matter of clotting and these tiny aneurysms, these little burst capillaries and so on, and, of course, there was a little bit of a delay in giving us blood thinners, the things like warfarin and apixaban, but, of course, now, they’re doing that.Ìý So, that may well help avoid the kinds of results on eye disease that you’re talking about today.

Ìý

White

Well, thank you all for joining us – Peter Hampson, Paul Bacon and Michael Rosen.Ìý And we’d like your reactions please.

Ìý

Well, after some very concerning news, we do have some potentially good news for one group of visually impaired people, although the usual no false hopes warning applies, which we always try to apply on In Touch.Ìý It’s been known for some time that gene therapy, the overriding of faulty genes with correct genes, could be effective in treating the condition Retinitis Pigmentosa, the one that Paul had in fact.Ìý It’s the commonest cause of inherited eye disease in the UK and now the charity Fight for Sight says it’s supporting this work in the hopes that it can identify groups for whom this kind of treatment has so far been ineffective.

Ìý

Well, Keith Valentine is Chief Executive of Fight for Sight.Ìý Now you’ve got Retinitis Pigmentosa yourself Keith, can you just explain exactly what your organisation’s involvement in this research is going to mean and why you’ve chosen it?

Ìý

Valentine

So, Fight for Sight is the leading national charity funding scientific research.Ìý We’ve got about 118 grants out at the moment with about £8 million worth of portfolio investment and we’ve put somewhere in the region of £660,000 over three projects into [indistinct words] treatment and [indistinct words] work to look at gene editing.Ìý You said there, before, as you were introducing me, Peter, about false hope, I’m leaning towards informed optimism as an alternative for that.Ìý I know, myself, as my daughter got diagnosed last year and RPs in every generation of my family and then I’ve obviously been, like many, many other people with the disease, looking for a step forward to preserve sight and potentially regenerate sight.Ìý What I am seeing now in the science overall is that there are incredible advances, things that might not point us to a specific moment in time in the next 10 years where that’s it, solved, but where you can see the groundwork being made for those leap forwards and those kinds of discoveries.

Ìý

White

Well, let me bring in one of the scientists, Mike Cheetham is one of the researchers on this project at University College London.Ìý I mean tell us about the work that’s going on now and what stage you’re at because you have, already, had some success, haven’t you, with restoring some vision using genetic techniques?

Ìý

Cheetham

Yes, Peter, there’s a range of sort of different gene directed therapies, now in the case of RP, an inherited retinal disease it’s the gene-based problems, so you need to know the causative gene and what type of changes in that gene are causing the disease and then you can think about therapies.Ìý Now it’s a very exciting time in the research area, we’ve seen one approved gene therapy, Luxturna, for RPE65 Leber congenital amaurosis.Ìý And there’s many other trials underway using gene directed therapies, either gene augmentation like the Luxturna or Antisense oligonucleotide, that I’ve been involved with or gene editing technologies, which are now also in clinical trial.

Ìý

White

Some of this is very technical for people, I’d like to hear your comments on what Keith said, making this point, because we warn about false hope and Keith said he thought we were entitled to move towards informed optimism, do you think that’s true?

Ìý

Cheetham

I think it is, you always need some caution in that some very promising things in pre-clinical work don’t always translate to clinical benefit.Ìý There’s some challenges around how we design the clinical trials.Ìý But I think the fact that there’s so many underway is definitely grounds for optimism.

Ìý

White

And you have actually, in some cases or one in particular, restored sight.Ìý I mean can you put that in context, how much sight?Ìý People aren’t going from little sight to full sight, are they?

Ìý

Cheetham

No, I mean I’ve been involved in a clinical trial, in the design of that, and the pre-clinical data which is one of these trials based on an antisense oligonucleotide therapy, so this is a small little patch of RNA which sticks over the faulty bit and corrects it and that actually, in the phase one, two clinical trials, at the early stage trials in clinic, some of the patients there were actually getting quite a lot of vision back.Ìý One individual was, what we call, a super responder, he went from the perception of light to being able to see signs and reading some large letters on those signs. And it’s a really striking case.Ìý And this has shown a very durable improvement in some other patients.Ìý Now this is a very small trial of only 11 patients in total.Ìý And the larger trial, the phase three trial, has had some more disappointing results and we’re now trying to unpick that, as to why it didn’t work as well in the larger trial as it did in the smaller trial.

Ìý

White

So, that’s why I’m trying to be very careful, while I’m trying to apply Keith’s informed optimism, there were still be a lot of people for whom this is too late won’t there?

Ìý

Cheetham

There will, a lot of these gene directed therapies are essentially preventative or restorative, you have to have – the light sensitive cells have to be present still, even if they’re not working properly for you to be able to reactivate them and restore vision or protect vision so it doesn’t decline further.Ìý Now if you’ve lost those cells then you have to think about some sort of regenerative or replacement therapy.Ìý And there are options developing on those – in that area as well, in terms of clinical trials for stem cell transplants, at the moment, there’s also chip based light sensitive material that’s being implanted.

Ìý

White

What will this involvement from Fight for Sight mean for the work you’re doing?

Ìý

Cheetham

I mean Fight for Sight’s playing a vital role in terms of sustaining the research base here in the UK.Ìý It really helps with sort of prime projects and take them forward to a stage where they can then be funded at a higher level as they move towards the clinic.

Ìý

White

Keith Valentine, just finally with you, there’s a lot of work going on to find treatments for eye disease, gene therapy is only one, stem cell surgery, new drug treatments, I just wonder how you manage to choose where to invest?

Ìý

Valentine

So, it’s a very good point, Peter, because whilst we are the biggest of the national charities investing, we are tiny compared to the scale of the problem and the kind of research that needs to go on out there and we’re doing everything we can to increase the money we’ve got to invest.Ìý But, as you say, ultimately, there has to be some prioritisation.Ìý Now why we’ve set up our scientific led grant approval panel, we are in the process now of putting out a grant that’s out for application and we react to the best of the science that comes forward.Ìý So, it’s a tough – it’s a really tough decision and, to some extent, the great worry, the thing that wakes me up night, is that we might miss something in the funding there.Ìý The best way of us avoiding that is to work closely with the scientific community.Ìý One of the things that’s important in the way that we articulate the science and build the investment with the scientists is that we act cautiously in that space but I feel it’s reasonable and common for people to be thinking about what might be done in relation to their eye health from investment.Ìý I’ve got a job with my team of making sure we get the money in there but also that we start to communicate effectively what’s going on in the science in a way that people can appreciate where it’s relevant to them and their conditions but without some sense of there being a miracle cure available.Ìý The science will grow if people can participate and be involved in it.

Ìý

White

Chief Executive of Fight for Sight Keith Valentine and researcher Mike Cheetham.Ìý I can feel a long running debate coming on.Ìý You can email intouch@bbc.co.uk, you can leave voice messages on 0161 8361338 or go to our website bbc.co.uk/intouch from where you can download tonight’s and many previous editions of the programme.

Ìý

Are we, perhaps, too pessimistic about what science can do?

Ìý

From me, Peter White, producer Fern Lulham and studio manager Owain Williams and Philip Halliwell, goodbye.