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IN TOUCH 鈥� Dry AMD; Mona Minkara

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TX:听 20.10.20听 2040-2100

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PRESENTER:听 听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 MIKE YOUNG

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White

Good evening.听 Tonight, one of the hardest forms of blindness to treat and one of the commonest but now you can play a part in trying to unlock its mysteries.听 And we鈥檒l hear from one globe trotter about her best and worst experiences of getting around the metropolis.

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Minkara 鈥� clip

It blew my mind.听 I was standing there and it鈥檚 like I didn鈥檛 need my vision at all.

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White

More from Mona Minkara in just a few minutes time.

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But first, news of a global study into dry age-related macular degeneration or dry AMD as it鈥檚 more commonly known.听 AMD is the biggest cause of sight loss in the UK; it affects more than 600,000 people.听 There are currently no approved treatments for dry AMD, which is the most common form of the disease.听 This new study is aiming to help understand the role genetics may play in whether or not you develop it.听 And researchers across the UK are now looking for people with the condition to take part by donating saliva samples.

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Audrey Drage is one of those who鈥檒l be doing just that, she lives in Royston in Hertfordshire, she鈥檚 78, she鈥檚 been explaining to us the impact dry AMD has on her life.

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Drage

Mine is quite advanced now.听 Straight lines are no longer straight.听 I can鈥檛 read a newspaper; I have to use a Kindle or my iPad so that I can expand everything.听 I won鈥檛 go out on my own because I feel as if I鈥檓 walking into a fog and that鈥檚 even worse when I go out in the car with my husband 鈥� we鈥檙e constantly driving into a fog.听 It just annoys me that people won鈥檛 go forward and help with research, I mean I鈥檝e always been willing to help with any research and if people would only go for the research, help with it, then it might bring an outcome.听 And it also worries me that it can be hereditary 鈥� both my parents had it.听 I just want the research to sort of carry on and get better and better because I don鈥檛 want to think that 鈥� I鈥檝e got three children, several grandchildren and I don鈥檛 want to think that they鈥檙e going to suffer with this.

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White

That鈥檚 Audrey Drage, talking about her contribution to this new study.

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Well, to find out more about it I鈥檓 talking to Professor Paulo Stanga, from the London Vision Clinic, he鈥檚 a retina surgeon.

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Professor Stanga, first of all, what exactly are you asking people to do?

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Stanga

Well thank you very much for giving us this opportunity to let people know about this study.听 As you know and as you鈥檝e said, there鈥檚 currently no approved treatment for dry age-related macular degeneration.听 And for years people with the dry form of the condition 鈥� because the wet can be treated with monthly or every other month injections and we鈥檝e been doing this very successfully for many years 鈥� but people with the dry form of macular degeneration have been told for years there鈥檚 nothing that can be done and there鈥檚 no need for you to be seen.听 Now things have changed.听 It is important that people with the dry form seek advice, so that they can be referred to one of the study centres.听 So, we have the Scope study which is a global natural history study which is enrolling participants, patients, through various centres throughout the UK, including us 鈥� the London Vision Clinic.听 We plan to enrol 6,000 people.

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White

And I guess Audrey, in a way, says it all in terms of motivation 鈥� why people might do this.听 She fears this could be passed on to her grandchildren and their children if we don鈥檛 find out who鈥檚 vulnerable and how to prevent it.

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Stanga

Absolutely, the more people we see the more we will know about the condition.听 This is arguably the largest study in its kind and all we are asking people to do is to attend hospital and give a sample of saliva.

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White

So, why is dry AMD so hard to treat in comparison with other forms of the condition because I鈥檓 always aware, when we talk about it, we say unfortunately this doesn鈥檛 apply to dry AMD, this must drive people mad?

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Stanga

Because there鈥檚 been significant advances in therapies to combat the leakage from blood vessels in wet AMD, we benefit from drugs that are available but there hasn鈥檛 been so much improvement in dry AMD.听 There are trials ongoing for the treatment of dry AMD and there鈥檚 been some success reported, especially if you start treating the disease at an early stage.

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White

So, how will this study work, what will you do with these samples that you鈥檙e going to get?

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Stanga

We take a sample of saliva and that sample of saliva is then studied, we looked at what genetic variance are involved, especially with regards to the immune system.听 The more we know the more we can treat this disease.听 And some of these patients, if they fit certain crucial criteria will be offered participation in interventional studies.

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White

I was going to ask you about that because you do say that some people, if 鈥� it doesn鈥檛 have to be entirely altruistic, that in fact you can move on to other studies.听 That鈥檚 really true, is it, because it struck me a lot of people, what they鈥檙e told is you have to catch this early and if you don鈥檛 catch it early we can鈥檛 help, so is there no danger here of raising false hopes in people?

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Stanga

There are studies that are already going on.听 Of course, we will need to wait for the studies to conclude to have more information with regards to success rate but other studies going on where patients can access treatment 鈥� the answer is yes there are.听 Myself, I am myself a surgeon, I鈥檓 already doing gene therapy surgeries in age-related macular degeneration of the dry type and so are others.听 So, it is important that people do approach a treating centre.

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White

And so, are these treatments 鈥� the gene therapy treatments that you鈥檙e doing 鈥� are they able to restore any sight or do they simply halt or slow its development?

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Stanga

It鈥檚 too early to say too much about restoration of vision.听 At present, what we can say is that some of the studies are reporting a reduction in the growth of the area of geographic atrophy, geographic atrophy is the area where there is cell loss in dry age-related macular degeneration, what causes that blind spot that Audrey was referring to in the centre of their vision.听 The smaller the blind spot the better the overall quality of vision.听 So far, we cannot report, to the best of my knowledge, that we are restoring vision.

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White

Now the middle of a pandemic may seem an odd time to ask people, many of them elderly, to head somewhere to donate a saliva sample, why do this now?

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Stanga

Why now?听 Well, the same as all other conditions they are not stopping because there is COVID 鈥� cancer continues, age-related macular degeneration continues, strokes continue 鈥� we can continue to offer our patients some alternatives.听 It is essential that patients with macular diseases, amongst others, continue to be seen.

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White

Professor Paulo Stanga, thank you very much indeed.听 And there is a number to call if you want to find out more about this trial, it鈥檚 01438 532142 and that number and a link with more details are all on the In Touch website.

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And thank you, as always, for your emails.听 There were a lot responding to the research that鈥檚 been launched jointly by the RNIB, Guide Dogs and the Thomas Pocklington Trust.听 The idea to find out what services blind people really want.听 Well, we questioned, on this programme, whether there wasn鈥檛 already plenty of research available and listener Professor Fred Reid cited three important investigations in this field.听 Two launched by former RNIB Chief Executive Ian Bruce and Network 1,000, that was produced by a research unit at Birmingham.听 And Professor Reid says: 鈥淚鈥檓 not at all sure that we will see progress, especially in the crucial fields of rehabilitation and employment highlighted by your two contributors.鈥�

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Alan Philpot says: 鈥淎 massive survey is a waste of money and an insult to people who have given donations, left property and other bequests in the hope that services and products would be subsidised to give blind people a better chance of having a good life.鈥�

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And Christine Ward says: 鈥淭here hasn鈥檛 been enough action from the big charities.鈥澨� She highlights the demise, well before lockdown, of home visits for setting up a computer.听 鈥淏ut let鈥檚 be grateful,鈥� says Christine, 鈥渢hat at last national and, I hope, local charities are working together as opposed to against each other.鈥�

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Now, a rather good way to shine a light on how we do things is to see ourselves as others see us and then have a look at how different countries tackle the same problems.听 Well, we thought we鈥檇 found a good way to do both when we spotted an article in the London Evening Standard about inveterate blind traveller Mona Minkara.听 Now Mona, makes regular videos for You Tube called Planes, Trains and Canes.听 She also happens to be a professor of bioengineering in the United States.

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Well, she was taking a bit of a pop at how the London Underground system treated its visually impaired customers.听 As someone who has quite frequently said on this programme how good I thought their customer service usually was, I was intrigued to find out what it was that had so upset Professor Minkara.

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Minkara

I went down into the tube, I just landed in Heathrow and I was told that I didn鈥檛 have the choice, that I had to accept the assistance in the London Underground.听 And I really just wanted the choice to be able to ride the tube by myself.

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White

You just happened to be videoing this of course?

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Minkara

No, I 鈥� so, intentionally I did 鈥� I did go 鈥� I won a prize called the Holman Prize given out by the Lighthouse of the Blind San Francisco to do a project and I intentionally wanted to travel around the world using public transportation systems and see how different cultures and systems interact with people who are blind.听 And so, I had a camera woman, I didn鈥檛 know where she was.听 And I do have to give credit to the people in the video, they did say that it was okay for them to be videotaped and we had that discussion.

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White

Tell you what, let鈥檚 just hear a little excerpt of what happened to you not long after you鈥檇 landed at Heathrow.

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Clip

Okay, you just relax, a member of staff will escort you to the train.

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Okay, I appreciate your help but I want the choice to be able to say 鈥� just show me the direction and then I figure it out.听 I would love that choice.

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You haven鈥檛 got that choice I鈥檓 afraid.

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Why?

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Because if they redirect the train somewhere else鈥�

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But I have 鈥� I have a phone that reads to me.

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No, no listen to me 鈥� we can鈥檛 redirect a train that鈥檚 either got a VIP or MIP on board 鈥� visually impaired person or mobility impaired person鈥�

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Well then forget it 鈥� like treat me like anybody else.

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We can鈥檛, I鈥檓 afraid.

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White

What was it about that encounter that got you so riled?

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Minkara

I mean he said it 鈥� we can鈥檛 treat you like anybody else.听 I believe I have the intelligence to decide the choice that I want from my responsibility over myself, right, I wanted to take that risk, I honestly didn鈥檛 care if the train got redirected or not, I wanted to explore the tube, it doesn鈥檛 scare me, I was okay with getting lost, I really wanted that experience.听 And so, I was being told I couldn鈥檛 have it.

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White

To be fair, shortly after you recorded, that member of London Underground staff did admit and realise that he was wrong and he鈥檇 made a mistake.听 But there are rules 鈥� they try to put you in a certain part of the train, they tend to insist that you鈥檙e met.听 I think that all of that upset you a bit as well didn鈥檛 it?

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Minkara

Look, at the end of the day, I think the assistance programme is great but I couldn鈥檛 envision having to deal with that every day.听 I feel very free here in Boston riding the train whenever I want, when it鈥檚 not COVID.听 That was just mind blowing to me but then he did backtrack.

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White

Because you tried to explain that you were quite happy to get lost, that was something you quite enjoyed.

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Minkara

Yes, and I know that some people out there 鈥� and I actually got comments on You Tube saying that that鈥檚 very selfish of me 鈥� but I feel like, at the end of the day, I have the right, as an adult, just like any other adult, to explore.

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White

How about the rest of the Underground experience that you had in London?

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Minkara

I didn鈥檛 really get that kind interaction again.听 There鈥檚 some pretty nice people that I鈥檝e interacted with.听 Overall, I loved it, I love the London Underground.听 I think it鈥檚 amazing.

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White

Why, because it is very crowded or it was before COVID, some people find it one of the most听 scary experiences they ever have?

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Minkara

To me it鈥檚 freedom.听 With the London Underground I truly can get around the entire city, it鈥檚 amazing, like there鈥檚 so many lines and it can go so many different places.听 And I love public transportation systems, I think they鈥檙e so underrated and they鈥檙e so valuable.

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White

So, Mona, who does it better, give us some examples of experiences you鈥檝e had elsewhere in other cities?

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Minkara

Tokyo, I think exceeded my expectation beyond anything.听 So, both Istanbul, Singapore and Tokyo they all had cane guides when I got there, which was kind of amazing to explore.

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White

When you say cane guides what do you mean because that鈥檚 not a term I don鈥檛 think we鈥檇 use?

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Minkara

Ah okay.听 So, cane guides are ridges in the ground, literally installed, so that a blind person can use their cane to guide themselves.听 So, it鈥檚 just like you follow these ridges on the ground and it can take you to the train or to outside.听 And so, what happened is in Tokyo they had really thought these systems out, that not only they have cane guides they had like an audio landscape, so they had like little sounds for running water to indicate that the toilets are nearby or sounds of tweeting birds to indicate where the exit is or every train line had a different melody.听 It blew my mind; I was standing there and it鈥檚 like I didn鈥檛 need my vision at all.听 In other cities, like London, you still have to ask which way is left, you know which way to really go or listen to the crowds.听 But in Tokyo I could stand there and I could tell you which train lines were coming by.听 And then they also have different sounds for crossing the streets 鈥� north, south, versus east, west 鈥� it blew my mind, the level of detail.听

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White

London, to be fair, they do have some, what they call, textured surfaces that tell you where the top of steps are, that tell where platform edges are but you鈥檙e saying these are more all-encompassing, what they do in Japan?

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Minkara

Yeah, this is like imagine a ridge that you get off the train, you feel it and it guides you all the way to outside and if you want to take a bus it can even guide you right to the door of the bus.听 They have them all over the sidewalks and if there鈥檚 construction they even have temporary cane guides that go around the construction site.听 It was unbelievable.听 Singapore had cane guides but their buses didn鈥檛 have a lot of announcements on.

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White

Which London does of course, London鈥檚 good for bus announcements.

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Minkara

London had bus announcements, yes, yes.

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White

How do you strike the balance then between those people who need a little help and those who need a lot of help because that鈥檚 the problem that a service like London Underground has isn鈥檛 it?

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Minkara

I think really what it comes down to, Peter, is human communication.听 At the end of the day, communicate with the individual, listen to what they have to say, not everybody鈥檚 the same, just like there are sighted people that are really wary 鈥� I know sighted people that would not want to tackle the London Underground and they have sight.

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White

So do I, so do I.

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Minkara

Yeah, it really is everybody has their own path, their own choice and I think, at the end of the day, we all just want to be heard, sighted or not.

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White

Have you travelled much since COVID on public transport?

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Minkara

No not really, you know, I鈥檓 avoiding the crowds.

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White

You are 鈥� you鈥檙e avoiding it for infection reasons not because you don鈥檛 normally avoid crowds do you?

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Minkara

No, no I don鈥檛, I don鈥檛.听 But I do have to say that I have learned to walk above ground Boston really well, like I鈥檝e been walking a lot more to get around.

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White

But are you afraid of the long-term implications this might have, about, for example, getting help when you do need it, all that sort of thing?

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Minkara

You mean like lack of crowds?

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White

People being nervous about taking our arms, blind people who say they鈥檙e nervous of taking other people鈥檚 arms, you know.

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Minkara

Yeah, I think that there鈥檚 always a solution if people just talk to one another, I don鈥檛 need to hold someone鈥檚 arm to be guided, if the person can communicate left, right, straight 鈥� I listen to people walking.听 It鈥檚 going to be an interesting challenge and the answers are not all there.

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White

Let鈥檚 hope one of these days we can both travel on a crowded London Underground train together.

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Minkara

Agreed.

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White

Mona Minkara thank you very much indeed.

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Minkara

Thank you and I really love London, just putting it out there.

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White

Mona Minkara, speaking to me recently from Boston.

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Do let us know your experiences of public transport 鈥� highs and lows around the world.听 That鈥檚 all for this week.听 You can email intouch@bbc.co.uk or you can go to our website bbc.co.uk/intouch, there you鈥檒l find more information and the opportunity to download tonight鈥檚 and previous editions of the programme.

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From me, Peter White, producer Mike Young and studio manager Phil Booth, goodbye.