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IN TOUCH – Diabetic macular oedema treatment, The Commonwealth Games

TX:Ìý 02.08.2022Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

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White

Good evening.Ìý Tonight, we’ll be seeing how our visually impaired athletes are doing in an integrated Commonwealth Games.Ìý And asking just how integrated are they.Ìý

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But first, we’re keeping that promise we made last week to balance not raising false hopes about medical advances in treating eye disease with informed optimism about new treatments because there is news this week of a new drug treatment, soon to be available on the NHS, which it’s being claimed could help over 20,000 diabetics with related eye diseases.Ìý The drug, brolucizumab, sometimes known as Beovu, has been approved by NICE, that’s the National Institute for Health and Clinical Excellence.Ìý Their job is to weigh the clinical and cost effectiveness of drugs or procedures.Ìý Well, the condition is diabetic macular oedema or DMO.Ìý

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Bernie Warren has it and she joins us.

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Bernie, first of all, just explain DMO’s effects on you.

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Warren

DMO has caused quite a bit of sight loss for me.Ìý So, I have issues with recognising people’s faces, reading, I have problems with colours, problems with bright lights, as well.Ìý So, there’s a multitude of issues that I face with DMO.Ìý I’ve had it for 11 years now.

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White

And, I mean, how stable is it, is it progressive, what can you expect to happen?

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Warren

So, my sight has deteriorated quite a lot within the last 11 years, which, to me, was quite a shock, actually, I didn’t think it would be where it is now, when I first started treatment 11 years ago.

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White

And how has it been controlled up to now?

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Warren

In 2011 I started with intravitreal injections, so that was the first bit of treatment that I was offered.Ìý In fact, when I was told I’d have injections, I’d never even heard of injections for the eyes and I literally shook with fear.Ìý But…

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White

It doesn’t feel like a very attractive prospect, does it?

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Warren

No, exactly.Ìý It’s the one place you really wouldn’t want an injection.Ìý But actually, it’s not nearly as bad as it sounds, I’m really glad to say.Ìý The treatment I’m on at the moment, and this is the third drug I’ve trialled, the regime is every month, so I go every month for an injection.Ìý I have to go to my hospital for the injections and it’s quite a long day really because, obviously, it’s getting to the hospital and you have to have your eyes dilated, so you couldn’t drive, I can no longer drive anyway, anymore.Ìý And then there’s a lot of waiting around in the appointments.Ìý You have your vision tested and then you wait to have a scan, called an OCT, and then you have to sit and wait and see the doctor who has a look at those OCTs and decides if I need an injection or not.Ìý I always do have an injection, regardless and that can be about three hours, three and a half hours.Ìý And then there’s the getting home afterwards and then because your eyes are dilated your eyes could be quite blurry or sight can be quite blurry and for me, I’m injected in my best seeing eye, so I don’t really have sight in my other eye, we did trial injections but they didn’t work.Ìý So, it is quite difficult.Ìý So, the rest of the evening my sight is really quite blurred and it’s not really until the next day that things are back to – of normal sight.

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White

So, what are the main effects that you’re hoping that this new treatment could provide for you?

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Warren

Firstly, obviously, you want it to work and stabilisation of my sight would be great.Ìý But the other really good thing about this particular drug is that there’s a hope that you’d be able to elongate the time between injections and there is real hope that the drugs that are coming through now that you won’t have to attend every four weeks, it could be six weeks or it could be eight weeks.

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White

One of the things which happens quite often in this whole area of visual impairment is that we hear about new drugs and we hear lots of promises and I’m just wondering how you cope with this and how you deal with the news that there’s now yet another new treatment?

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Warren

I think it brings real hope.Ìý I mean bearing in mind, when I was first diagnosed, I was on a drug called Avastin and that wasn’t even recommended to be used within the eye but now there are these drugs that are coming forward that actually are definitely recommended for use in the eye.Ìý Treatments are incredibly important, in fact, as a patient I think it’s the one thing I grab on to, a treatment that is going to possibly help me or help others.Ìý I know people in their 30s with this condition and it’s great to hear that there is research on the condition you have and as a patient, that means an awful lot, that time and money is being spent, that makes me feel, as a patient, that they’re actually investing time and effort into my life really.

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White

Bernie Warren, thank you very much indeed.

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Well, I’ve also been talking to Robin Hamilton, ophthalmic surgeon at Moorfields Eye Hospital. He’s been telling me more about DMO and its causes.

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Hamilton

So, if you’re diabetic, either a type 1 or type 2 diabetic, then you’re at risk of changes in the back of the eye, primarily that is either retinopathy or maculopathy, so maculopathy is diabetic macula oedema.Ìý And, essentially, this is swelling on the macular, the macular is the essential bit of the retina that we read with, and if you get swelling on the essential bit of the retina then this will reduce your visual acuity and affect your activities of daily living.

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White

Now is this a totally new drug or is it more the fact that it’s now considered cost effective enough to be prescribed on the NHS?

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Hamilton

It’s a drug that’s been available for the treatment of macular degeneration for over a year now, so it has been in the marketplace and approved by NICE for that disease.Ìý But recent studies have shown the benefit and the cost effectivity for treatment for diabetic macular oedema and now it is due to be or it has now been approved, just recently, by NICE, for the treatment of diabetic macular oedema.

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White

Now there have been some quite big claims, I mean I’ve seen the figure that this will help over 20,000 people, that is a big claim, can it be justified?

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Hamilton

It can.Ìý The numbers of diabetics in the UK increases.Ìý The latest data would suggest that over four and a half, nearly five million, patients have diabetes and the prevalence of macular oedema associated with this is over seven per cent, which is a big number of patients.Ìý Not everybody, however, needs and would benefit from injections but I would expect it to be over 22,000 at least.

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White

And what about other treatments for diabetic related eye conditions because there are quite a lot of them, aren’t there?Ìý How optimistic should we be about their ability to halt or maybe even reverse these kinds of eye conditions?

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Hamilton

Well, traditionally, we used to use a lot of laser for diabetic macular oedema, we still use laser for diabetic retinopathy, that’s still the mainstay of therapy.Ìý But these injections are becoming increasingly commonplace and actually where in the past laser just use to maintain vision, the injections now improve vision.

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White

So, optimism is justified because as… you know, people hear a lot about treatments, quite often they are exciting but there’s quite a long timescale before they’re going to be available and therefore effective because, presumably, this isn’t the last in this treatment of this kind of condition?

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Hamilton

That’s right, this is the latest treatment for this condition.Ìý We have had a number of different injectable anti-vegfs and injectable steroids for this condition and as time progresses the technology improves, the number of injections goes down and therefore, the burden on patients coming for these treatments should be less.Ìý And I see, with time, that the number of injections that are required in two, three, five years’ time will significantly be less and therefore our patients will benefit, certainly in the long run, for improved technologies.

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White

Robin Hamilton, thank you very much indeed.

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Well, we’ve had plenty of successes for our home athletes, in the pool, on their bikes but the first gold medal winner I spoke to performed on both and still had the energy for a sprint on foot to the finishing line.

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Paratriathlon winner, Dave Ellis, told me what it felt like to win in an integrated championship cheered on by a huge crowd.

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Ellis

Oh yeah, it was unbelievable.Ìý Obviously, parasports are a little bit different, not maybe used to that kind of crowds.Ìý Yeah, head out on the bike after the swim leg and get that sort of crowd all the way through the bike course and then…the noise from the grandstand was unbelievable.

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White

Any idea how many were there?

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Ellis

I couldn’t really tell but it sounded very loud, a lot of people.

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White

Right.Ìý One of the things you do, you have to do, is you have staggered starts, don’t you, which reflect the degree of sight that people have got.Ìý Can you just explain about that?

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Ellis

Yeah, that’s… so, obviously visually – visually impaired racing and blind athletes head-to-head would be a little bit unfair so they came up with a stagger to set the blind athletes off first, two minutes 47 later we set off and, yeah, try and chase them down.Ìý It changes every couple of years, I think maybe just kind of based on results but, yeah, it’s very difficult to actually say what is fair and what isn’t fair, I guess.

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White

Well, congratulations.Ìý Let me bring in Jonny Riall, who’s team leader of Team England.Ìý I mean you must be pretty happy with your team’s performance, especially in the triathlon, winning not only the men’s but the women’s event as well.

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Riall

Oh, honestly, I think we’re, as a team, on a cloud nine this morning really.Ìý As you say, we won the men and the women’s visually impaired race before going on to win the relay in the afternoon.Ìý So, an amazing atmosphere in camp and an amazing end to a fun games.

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White

And just tell us a little about Katie – Katie Crowhurst – she’s only 18, isn’t she?

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Riall

Yeah, absolutely, Katie is somebody who I first heard about just over a year ago, Katie was a world class programme swimmer who’d expressed an interest in wanting to do triathlon.Ìý And she’s a performer and with Katie, guided by Jesse Fullagar, who, in her own right, is a fantastic athlete, they just raised their game yesterday.Ìý Unfortunately, on the day, Alison Peasgood, who was their main challenger from Scotland, who, obviously, then is part of the same British programme, had a crash and, obviously, our thoughts go out to Alison and Hazel on the day but Katie and Jesse were at the front of the field and, yeah, fantastic.

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White

How tough is the paratriathlon?

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Riall

Oh, you know, I think, from a physical challenge it’s triathlon, so it has all of the same physical challenges that you would see in an Olympic distance race.Ìý Obviously, with the visually impaired category, you’ve got that added complexity that you’ve got to get two people on a start line, fit, healthy, you know you go through a race and there’s twice as many things that ultimately can go wrong.Ìý So, when we have a day like yesterday and everything just seems to go flawlessly, that will happen once in a – potentially in a generation when we travel with a team like that.Ìý That feeling we had yesterday is something that you’ve just got to hold on to because it doesn’t come round very often.Ìý In terms of physical challenges, it’s right up there with what you would see from an Olympic team, it just has a few added complexities.

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White

What’s your own view about the integrated events?Ìý We talked to Dave about the excitement of getting the crowd but I suppose one disadvantage, because you work for the British Paralympic Association as well, is that not as many disabled people can compete as would in the Paralympics because of the number of categories which have to be fitted in, is that a bit of a problem?

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Riall

No, I wouldn’t say problem, I think you’ve summed up the challenge really well.Ìý The experience that, as a team, we’ve gone through over the past few weeks, preparing into this event, a home games, Commonwealth Games, where we’ve been able to have our visually impaired athletes, our Olympic athletes, established names relaxing together, playing [indistinct word] together, eating together, like the atmosphere that we’ve had in camp – it’s been a one which is unique I think to a Commonwealth Games, unique to a home Commonwealth Games.Ìý And I think there’s something really special about what the Commonwealth Games can offer to teams in the moment.Ìý But you’re absolutely right, I, as a person who works for the British Paralympic Association and has worked proudly with the British triathlon, paratriathlon team, over the last decade, you know you recognise the standards that a Paralympic Games has to put disabled athletes absolutely up front and centre within a paratriathlon programme.Ìý There were five categories who couldn’t compete at this games, you know, so hopefully they would have all been at home watching and cheering.Ìý But I think the Commonwealth Games is unique and I think you have to just – you’ve got to enjoy that uniqueness but, at the same time, not underestimate the power that a Paralympic Games has on disabled athletes, to give them that platform and that moment really for the whole sport.Ìý And, ultimately, all we try and strive for is that we can keep demonstrating just what sensational sports people, para-athletes are, para-triathletes are and hope that we can continue to get more of that profile so that they get an opportunity that you would see in many Olympic athletes, whether that’s in prize money, whether that’s in sponsorship.Ìý It’s come a long way but there’s definitely – there’s definitely a long way that we can still push things.

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White

And just one thing based on that, could you see, ever, the Paralympics becoming fully integrated with the Olympics in the way that the Commonwealth Games is, at the moment, but with the kind of reservations that you’ve expressed about it?

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Riall

I think on a personal level, no, I can’t really, actually.Ìý I think there is something so special about a Paralympic Games that, in my mind, it needs to be protected.Ìý I think the opportunity you’ve got to just put two weeks aside to show the world what unbelievable things that disabled athletes can do.Ìý You know, we talk about inspiration but actually you just need to see what amazing sports people they are.Ìý To integrate that into an Olympic programme I think would dilute that opportunity to highlight that.

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White

Just quickly go back to Dave Ellis.Ìý As an athlete, what do you think about that?Ìý I’m just wondering whether an integrated event is, in some ways, more than the Paralympics or you think that the Paralympics has to exist as it stands at the moment without necessarily integrating into the Olympics.

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Ellis

The Paralympics is just massive.Ìý I know from – like my girlfriend went to the Paralympics very young and it was almost a feeling of acceptance that it was only para-athletes all coming together and she saw people with different disabilities all there just coming together.Ìý It made her feel a lot happier at having a disability.

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White

Dave Ellis and England team leader Jonny Riall.

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Plenty of other successes for home country competitors over the last few days.Ìý ±«Óãtv Sports reporter, Delyth Lloyd has been rounding them up for us.Ìý Staying with the women’s triathlon and a medal for a family that seemed to have hedged its bets.

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Lloyd

Yes, not just any family connection, the MacCombe twins, Chloe and Judith, only took up the sport a couple of years ago and already Chloe has a Commonwealth Games medal for her efforts.Ìý Along with her guide, Catherine Sands, she finished just over four minutes behind the winner Katie Crowhurst, to take home silver for Northern Ireland.Ìý Her sister, Judith, missed out on a medal finishing fourth but Chloe says she might share hers.Ìý

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Wales’s first gold of Birmingham 2022 was secured by visually impaired cyclist James Ball, along with his pilot Matt Rotherham.Ìý He won the men’s tandem B sprint on day three.Ìý That’s his second medal of the games.Ìý

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After taking silver in the 1,000-metre time trial in the women’s race, Paralympic champion, Aileen McGlynn took bronze for Scotland with her pilot Ellie Stone.

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There was heartbreak for England’s Sophie Unwin despite finishing third in the tandem B sprint on Friday, they were denied a bronze because despite five teams entering the race, only four started, which means under games’ rules only gold and silver medals were awarded.Ìý But just 48 hours later, along with her pilot Georgia Halt, Sophie took silver in the tandem B time trial at the Lee Valley VeloPark.

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Birmingham 2022 is the first time that visually impaired classifications were featured in the para-swimmer programme at the games.Ìý Seven times paralympic medallist, Hannah Russell, took silver for England in the 50 metres freestyle S13 final on her Commonwealth Games debut.Ìý While Scotland’s Stephen Clegg improved his own British record as he won silver in the men’s race, missing out on gold by just 100th of a second.

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White

Delyth Lloyd reporting there.Ìý And with five more days to go, we’ll keep you up to speed with other medal winners next week.

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And that’s it for today.Ìý All the usual ways of keeping in touch with us – email intouch@bbc.co.uk, you can leave voice messages on 0161 8361338 or you can go to our website bbc.co.uk/intouch.Ìý From me, Peter White, producer Beth Hemmings and studio managers Nat Stokes and Colin Sutton, goodbye.