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BBC Radio 4 In Touch
03 June 2008

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Factsheet

PROFESSOR PHILLIP ROSENFELD

The Royal College of Ophthalmologists recently held their annual scientific meeting in Liverpool, attracting specialists from all over the world; amongst them, Professor Phillip Rosenfeld, Professor of Ophthalmology at the Bascom Palmer Eye Institute in Miami.

Professor Rosenfeld pioneered the use of the drug Avastin to treat Macular disease. Peter talked to him about Avastin and other scientific developments in the eye care field.


ABOUT AMD
The macula is located at the back of the eye at the centre of the retina. It enables us to see what's directly in front of us and allows us to see fine detail. It plays a vital role in helping people to read, write and drive, and perform other detailed tasks. It also enables us to recognise faces and see colour.


DIFFERENT TYPES OF AMD

There are two types of AMD, 'dry' and 'wet':

Dry AMD is the commonest form of the condition. Cells in the retina fail to function properly as a person gets older. The cells don't take in enough vital nutrients and fail to clear by-products of cell functioning. This causes tiny abnormal deposits, called drusen, to be left under the retina, making it uneven.

In time, retinal cells degenerate and die causing sight loss.

This occurs very gradually over many years. Currently, there's no treatment for this type of AMD, although there are vision aids available that can help people to maximise the use of their residual sight.

Wet AMD accounts for 10 to 15 per cent of cases. It often develops quickly and is also known as 'neovascular AMD' because it involves the growth of new blood vessels behind the retina.

These new blood vessels are very fragile and so may leak fluid or blood. This results in scarring that causes rapid visual loss.

Fortunately, new treatments mean it's possible to treat the majority of cases.


CAUSES

It is unclear what causes AMD. It becomes more likely as a person ages because, over time, the cells in the macula become damaged and worn out.

Both eyes are usually affected, although one eye may be affected before the other. The good eye usually compensates for the affected eye and for many years this can disguise the fact that there’s a problem. There's no pain or redness of the eyes.

Because it's central vision that's affected, patients retain some residual vision, but this is at the periphery of their field of vision where images aren't in focus.

Any activity that requires detailed, clear vision is compromised, and in the late stages of the disease sight loss is so severe that patients are offered registration as partially sighted or blind.


TREATMENT

Currently, there is no medical treatment for dry AMD. However, not smoking and eating a healthy diet may help to slow the rate of deterioration.

Additional lighting and magnifiers can help those with dry AMD to make better use of their residual sight.

Medical breakthroughs in the treatment of wet AMD mean that, in most cases, treatments can prevent further visual loss, and in some cases restore partial sight.

There are three types of treatment for wet AMD:

  • Photocoagulation uses a hot laser to seal leaking blood vessels, but can only be used in a minority of cases where the leakage is not directly in the centre of the macula.
  • Photodynamic therapy (also known as PDT) uses a cold laser to seal leaking blood vessels. This involves injecting a drug that reaches and coats the abnormal blood vessels via the blood stream. The drug is then activated by shining a light at the coated blood vessels and it destroys them.
  • Anti-vascular endothelial growth factor (anti-VEGF) treatments target a protein involved in the formation of new blood vessels. High levels of VEGF can cause proliferation of blood vessels and fluid leakage. The drugs are injected under the macula. The number of injections varies. In trials the injections were given either every four or every six weeks, but in practice clinicians have to decide on the most appropriate treatment regime based on their assessment of the patient's response to the drugs. Anti-VEGF treatments have been shown to halt sight loss and in some cases restore it.



One type of anti-VEGF treatment is currently licensed in the UK and most treatment is private. Patient groups are campaigning for treatment to be made available on the NHS.

To find out if an anti-VEGF treatment would help your condition, talk to your eye specialist.


CONTACTS

THE MACULAR DISEASE SOCIETY
PO Box 1870
Andover
SP10 9AD
Tel: 0845 241 2041
http://www.maculardisease.org/
The Macular Disease Society is a self-help society for those diagnosed with any of the eye conditions encompassed by the overall name of Macular Disease.
The Society is dedicated to providing information and practical support so that those with the condition may make the most of their remaining vision.


RNIB
Royal National Institute of the Blind
105 Judd Street
London
WC1H 9NE
Talk & Support Services telephone number: 0845 3303723
Helpline: 0845 766 9999 (UK callers only - Monday to Friday 9am to 5pm)
Tel: 0207 388 1266 (switchboard/overseas callers)
Web: www.rnib.org.uk
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.


NATIONAL INSTITUTE OF CLINICAL EXCELLENCE (NICE)
http://www.nice.org.uk/


BIG BROTHER
Last Thursday saw the first blind resident enter the Big Brother television programme, another competitor is partially sighted.

The blind man is Michael Hughes, who works for Insight Radio, the dedicated radio station for blind people based in Glasgow.

Peter talked to Ross Mcfadgeon, who works with Michael, to find out how he might cope.


AMERICAN BANKNOTES

The US Treasury has been told to redesign its banknotes to make them easier for blind people to tell them apart.

This follows a landmark ruling by a US Federal Appeals Court, in a lawsuit brought against the government by the American Council of the Blind.


GENERAL CONTACTS

RNIB
105 Judd Street
London
WC1H 9NE
Helpline: 0845 766 9999
Tel: 0207 388 1266 (switchboard/overseas callers)
Web: www.rnib.org.uk
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.


HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP)
John Derby House
88-92 Talbot Road
Old Trafford
Manchester
M16 0GS
Tel: 0161 872 1234
Email: info@hsbp.co.uk
Web: www.henshaws.org.uk
Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford.


THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA)
Burghfield Common
Reading
RG7 3YG
Tel: 0118 983 5555
Email: guidedogs@guidedogs.org.uk
Web: www.guidedogs.org.uk
The GDBA’s mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.


ACTION FOR BLIND PEOPLE
14-16 Verney Road
London
SE16 3DZ
Tel: 0800 915 4666 (info & advice)
Web: www.afbp.org
Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available.


NATIONAL LEAGUE OF THE BLIND AND DISABLED
Central Office
Swinton House
324 Grays Inn Road
London
WC1X 8DD
Tel: 020 7837 6103
Textphone: 020 7837 6103
National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK.


NATIONAL LIBRARY FOR THE BLIND (NLB)
RNIB Customer Services on 0845 762 6843
Email: cservices@rnib.org.uk
Web: www.nlb-online.org
The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted.

Trustees from the Royal National Institute of the Blind (RNIB) and the National Library for the Blind (NLB) have agreed to merge the library services of both charities as of 1 January 2007, creating the new RNIB National Library Service.


EQUALITY AND HUMAN RIGHTS COMMISSION DISABILITY HELPLINE (England)
FREEPOST MID02164
Stratford upon Avon
CV37 9BR
Tel: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878
Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 8:00 am-8:00 pm.
Enquiry: englandhelpline2@equalityhumanrights.com
www.equalityhumanrights.com


Equality and Human Rights Commission Helpline Wales
Freepost RRLR-UEYB-UYZL
1st Floor
3 Callaghan Square
Cardiff
CF10 5BT
0845 604 8810 - Wales main number
0845 604 8820 - Wales textphone
0845 604 8830 - Wales fax

9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)

Enquiry: waleshelpline@equalityhumanrights.com
www.equalityhumanrights.com



Equality and Human Rights Commission Helpline Scotland
Freepost RRLL-GYLB-UJTA
The Optima Building
58 Robertson Street
Glasgow
G2 8DU
0845 604 5510 - Scotland Main
0845 604 5520 - Scotland Textphone
0845 604 5530 - Scotland – Fax

9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)

Enquiry: scotlandhelpline@equalityhumanrights.com
www.equalityhumanrights.com


DISABLED LIVING FOUNDATION
380-384 Harrow Road
London
W9 2HU
Tel: 0845 130 9177
Web: www.dlf.org.uk
The Disabled Living Foundation provide information and advice on disability equipment.



The BBC is not responsible for external websites 

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Transcript


WHITE
Good Evening. Tonight we talk to one of the world's leading ophthalmologists about drugs, trials, and just how far we've got in preventing blindness. And we’ll be moving house

BIG BROTHER MUSIC CLIP

We’ll be asking how blind brother is likely to get on in Big Brother. And when is a helping hand, a demeaning gesture? We'll be examining the debate about whether American banknotes should vary in size to distinguish them from each other. But first, The Royal College of ophthalmologists recently held its annual scientific meeting in Liverpool, attracting specialists from all over the world; amongst them, Phillip Rosenfeld, Professor of Ophthalmology at the Bascom Palmer Eye Institute in Miami. He’s the man who pioneered the use of the drug Avastin to treat Macular disease. Now we've featured several times on this programme the controversy over Avastin. It’s not licensed for use in the eye in this country, although many ophthalmologists do prescribe it and believe it’s effective and safe. One of its other attractions, it’s only a fraction of the cost of Lucentis, which is licensed. Well when I caught up with him, Professor Rosenfeld explained that he’d noticed a molecular similarity between Lucentis and Avastin, a drug previously successful in the treatment of colon cancer.

ROSENFELD
I started using Avastin back in 2004, once the drug was approved by the FDA in the United States. It was approved for colon cancer. My experience with a similar drug, Lucentis, led me to conclude that Avastin would probably be an excellent choice for the treatment of wet(?) Macular degeneration. Our experience at first with Lucentis was that when you injected Lucentis into the eye of a patient, we saw dramatic improvement, something we had never seen before, dramatically the fluid would go away, the blood vessels would regress and patients would see better. So based on knowing the molecular biology of the two drugs, we initially studied the Avastin systemically, we were giving the Avastin intravenously just like it was given to cancer patients. And this was done within a university approved clinical trial. We studied 18 patients, with dramatic benefit. In fact the best benefit I’ve seen with either Lucentis or Avastin injected into the eye, has been from this systemic therapy of Avastin.

WHITE
And yet, you obviously know, there’s been concern expressed in the UK, particularly the idea that although Avastin’s results have been quite good, there is this worry that it hasn’t been fully tested in the eye, and because the eye is such a delicate and a small organ, that we don’t really know what its long term effects might be.

ROSENFELD
Well first and foremost, we don’t know what the long term effects of Lucentis are. More eyes have been studied with Avastin than has been studied with Lucentis. And we have more clinical experience with Avastin in different diseases than we have with Lucentis. At a recent international meeting called ARVO which is held every year in May, there were 244 abstracts, of over 200 abstracts the year before, and as you review all the published literature, reproducibly, the drug is safe in animals. It’s safe in cell culture. And it’s safe and effective in humans. And this is being reproduced over and over again all over the world. So for those people who argue just because a drug is used off label, can’t be proven to be safe, that’s ridiculous, number one. And number two we have a long and glorious history in ophthalmology using drugs off label. In fact most drugs in the world today, are used off label.

WHITE
And just to look at that specifically in the UK context, I mean here we are using Lucentis, Lucentis has now been approved as far as use for this kind of condition, but we’re not using Avastin, it’s being used privately, but the fact that it’s not got a licence in this country for use in the eye, is being used as a reason for it not being used certainly on NHS. Are you surprised that this argument is still going on?

ROSENFELD
I am very surprised that this argument is still going on. I don’t know why authorities would argue with that issue, particularly since there’s no obvious financial motivation. In the United States, Medicare covers both Avastin and Lucentis, and there’s a huge differential in what they pay. Lucentis they pay over $2000. And Avastin somewhere around $50. Yet they leave it to the discretion of the physician. And interestingly, the majority of patients in the United States are treated with Avastin. Why? Because clinicians perceive no difference in efficacy or safety.

WHITE
Yeah, and the cost argument seems to be the same in Britain, that Avastin is far less costly. So it seems strange, ‘cos clearly if Lucentis is going to be used and people are worried about cost, that would presumably mean that far less people could be treated for the same amount?

ROSENFELD
Not only that, but there are other diseases that we have found Avastin at being incredibly beneficial. Vein occlusion. Diabetes, particularly the periphrasis form of the disease. And we have found applications for Avastin that we would never have found for Lucentis at this point in time. Because Lucentis is just too expensive.

WHITE
Just finally, can I ask you a kind of more general question about where we are with eye disease. Because, if you listen to reports these days, you know, it would seem to be a very exciting time, with gene therapy, the kind of drugs we’ve been talking about, stem cell surgery. We talk of bionic eyes. And yet, am I wrong to suggest that the last thing to really halt blindness and give people back sight in real large numbers, was actually the kind of revolution in cataract surgery in the early 50’s. In other words, all these things are very exciting, we’re told they’re just around the corner. But at the moment, they’re not stopping all that many people going blind.

ROSENFELD
Well cataract surgery was clearly a revolution, and yet they didn’t implant lenses into the eye and how that whole technology has evolved. A tremendous back through in eye diseases. But that’s in the front part of the eye. And that’s a mechanical part of the eye, much like the joint is a mechanical structure. And those mechanical parts can be replaced. The issue with the eye is, it’s for the most a neurologic structure, the retina’s an extension of the brain. So when we talk about diseases that affect the retina in particular, we’re talking about neurologic degenerative diseases. And this has been where the slogging has gotten quite rough over the years. We’ve had tremendous breakthroughs, just most recently with the gene therapy, through labours congenital amerosis. And now in the treatments of neovascular age related macular degeneration. And in the future with stem cells. In the 12 years that I’ve been in practice, there’s been a revolution. So while you may perceive it as a slow progression, I see it as a dramatic series of events, one after another and after another which has dramatically improved the ability of patients to see later in life. I think between the surgeries that have been developed for glaucoma, retinal detachment surgery, (??) to remove blood in the eye and repair retinal detachments, and the pharmaco therapies that have been developed not only for glaucoma but for age related macular degeneration, I think we’ve seen some dramatic improvements in quality of life and vision.


WHITE
The views of Professor Phillip Rosenfeld. Now I'd better come clean at this point. I'm not a Big Brother fan. Indeed I'm not really a so-called reality TV fan. There's enough reality going on in my kitchen for my liking. But many people are, and it’s been argued that Big Brother should cast its net wider for its houseguests. For example, welcome in disabled people. And following the success, for instance of a housemate with Tourette’s Syndrome, last Thursday saw the first blind resident enter the house and another who’s partially sighted. The blind man is Michael Hughes, he works for Insight Radio, the dedicated radio station for blind people based in Glasgow, and I'm joined by his boss Ross McFadyen.
Ross, first of all it all kicked off in the house last night and Michael was at the centre of it, what did you make of the way housemates actually treated him?

McFADYEN
Yeah, it did kick off and it was I think an interesting situation. And one that if I’m honest, I thought would definitely rear its ugly head, but perhaps not quite as quickly as it did.

WHITE
You mean this idea of being slightly sort of patronising, almost treating Michael at times, some of them, as if he was a bit of a pet?

McFADYEN
Yeah, very much so. It was like the family pet, and you know, the classic line, ‘does he take milk in his tea?’ was you know, probably a very good example of how they were dealing with the situation, albeit very badly. I think if anything it’s going to be an education both the housemates and also for viewers of Big Brother.

WHITE
But I mean is that in some ways, a bit dangerous? You know, doesn’t it tend to reinforce things that people have being saying for years, exactly the kind of things that we want to get away from?

McFADYEN
Well I think it does. But however what I would say is, we have somebody in Michael who will not be shy to make sure that they understand perhaps what they did wrong. Perhaps what they could have done differently. And certainly, you know, above all else, there was an argument brewing in the kitchen on the programme between several housemates, which involved Michael, and Michael was actually present there and he wasn’t included in the argument whatsoever. And yet the argument as surrounding him. And so I think as long as Michael, which I’m sure he will, stands up for himself and is vocal about the situation, then I think that will bring the situation forward in a positive way.

WHITE
Isn’t he on a bit of a hiding to nothing in some ways, though, because of course it’s not just how the public will see him, it’s how other blind people will see him. And they’ll, you know, he’s almost got to be a representative of all of us. Now I wouldn’t fancy trying to be a representative of all blind people, it’s bad enough being presenter of In Touch!

McFADYEN
Well yeah, I mean I think that’s a responsibility in itself. And you know first and foremost Michael has gone in there to represent Michael. But yes you’re right, you know, by default he is going to represent blind, partially sighted people whilst in the house. And you know I’ve spoken to numerous people since last Thursday, and since Michael appeared on our screens, who have been both concerned and amused at the idea of Michael representing blind partially sighted people generally. It horrifies some people. It pleases others. And everybody has their opinion as to whether Michael is a good representation of blind partially sighted people. But you know, at the end of the day, everybody in that house is representing themselves or whatever anybody else sees them representing.

WHITE
Well we’d welcome other peoples’ views about it, Ross McFadyen thanks very much.
Now the United States has the reputation of being pretty hot on access, they had legislation about physical access and about discrimination in employment long before we did. But I must say on my visits there I found the fact that all their money bills are the same size, was a real pain. Many people told me there were lots of ways round it, but I must say I never found one that was effective when you were standing in a queue in a shop, holding up a load of irritated Americans behind you. Now though it’s apparently set to change as the US Treasury has been told to redesign its banknotes to make them easier for blind people to tell them apart. This follows a landmark ruling by a US Federal appeals court, in a lawsuit brought against the Government by the American Council of the Blind. So are all American blind people cheering? Some are, but not all. Jane O'Brien has been looking at the story for us. First of all Jane, presumably the American Council for the Blind’s pretty pleased about this?

O’BRIEN
Of course, they say it’s a significant ruling and an important legal triumph for equal rights campaigners. And they hope it will get the Treasury to seriously address the concerns that they’ve been voicing the last few decades. And Melanie Brunson who’s the ACB’s Executive Director, says she feels vindicated by the result.

BRUNSON
This is the highlight of my last ten years being here. But it’s not over til it’s over. And we don’t have accessible currency yet. But I think having this decision, two courts fairly conservative courts, saying, you know, the Government has to do this, is a huge huge victory for us.

O’BRIEN
And Eric Bridges, who’s another ACB member says the ruling will make a huge difference to him personally and to the rest of America’s 3 million or so blind and visually impaired. For him it means independence.

BRIDGES
I will no longer have to rely upon the goodwill of strangers to tell me what denominations I’m getting back. It’s an extraordinary frustration, and it’s money that I’ve earned, and I should be able to independently identify it without having to ask others. You know, it’s a huge move forward in overall accessibility. We use currency every day, it’s a fundamental tool or instrument of our daily lives. So now the prospect of having accessible paper currency is a tremendous move forward.


WHITE
So Jane, is there unanimous joy amongst the blind and partially sighted people of the United States?

O’BRIEN
Well no, in fact there’s been some criticism that the action was brought in the first place. These people from the National Federation of the Blind for instance, say that not being able to identify bank notes is merely an inconvenience and it really doesn’t amount to discrimination.

MARK
I have a problem with the lawsuit all the way around. It shouldn’t be for something that really blind people don’t have a problem doing. There are other areas where I’d like to see us using the law as it’s intended, to help create opportunities and level the playing field for blind people. Money has not reached that level in my mind.

ELLEN
I saw some bills, I think it was Holland about 20 years ago, and they had some kind of textural difference that I found difficult to discriminate, so I probably would still use the folding method. It might make some difference if I had some bills and I was at home and I wasn’t sure what they were, I might have another way of identifying them, but I don’t think that it would make a big difference in terms of how I do things now.

MARK
There are plenty of things that are inconvenient. When I go to grocery store, I can’t identify one box of cereal from another. So I think it’s borderline a dangerous precedent for a court to make a ruling based on merely an inconvenience. But there are a lot of things out there that are inconveniences, that blind people deal with every day, like grocery shopping. There are ways around it. And I don’t necessarily think that the court’s the right way to go about it.


WHITE
Interesting reactions, Jane, so what’s gonna happen next, is the Treasury going to comply?

O’BRIEN
Well under the United States somewhat complicated legal system, the Treasury has 45 days from the date of the decision which was May 20th, to ask fro a full hearing before the entire circuit of the district court, and they also have 90 days to appeal to the Supreme Court. The Treasury hasn’t said whether it’s actually going to do this, but a spokeswoman told me that whatever happens, they will be working with the blind community to look at ways to make bank notes more accessible.

WHITE
Jane O’Brien thank you very much.

So why does the National Federation of the blind, with its membership of over fifty thousand Americans, not want the American currency changed? Well I’m joined by federation spokesman Chris Danielsen from the Federations headquarters. So what is the objection basically, what’s the principle at stake here?

DANIELSEN
The problem is that this court ruling said something very strange, which is that blind people are discriminated against because of the way that the Treasury currently designs money. Now the court in this case says that blind people are being discriminated against because we are denied the benefits of the currency, and we don’t have meaningful access to it. Well we have meaningful access to it, we can use it when we spend our money we get the goods and services that we pay for. So we’re not being discriminated against, in terms of having access to and using the money. Now it’s certainly inconvenient for us that the money is not texturally distinguishable, and we have to find ways around that.

WHITE
So how do you distinguish between what is an inconvenience, and what is something which is so fundamental it really has to be changed?

DANIELSEN
Well for discrimination to occur, we believe that you have to pretty much totally be barred from doing something or having something, and that there is no alternative technique that you can really use in order to achieve equality with the sighted. So for example, if a web site is designed in a way where a blind person using a screen access programme simply can’t access it, can’t do anything on the website, then the website needs to be changed. But in the situation with money, there are ways of coping with it, and the reality is that most merchants are not going to, when they’re giving you change back, which is when most blind people receive bills and identify them, they’re not going to cheat you. so the system that we have has worked fairly well. And we don’t think the court needed to change it. Now if Treasury goes ahead and wants to talk with us about how they should change the currency that’s fine. But it shouldn’t happen because a court feels sorry for us and says we’re discriminated against.

WHITE
It’ll be very interesting to see how it pans out. Chris Danielsen, thanks very much indeed.
And that's it for today We'd like your comments on any of those stories, plenty of intrigue there. And your views on what else we should be covering. You can call our Actionline on 0800 044 044 or email us via the website. And there's a podcast of today's programme from tomorrow. From me Peter White, my producer for today Kathleen Griffin, and the rest of the team, goodbye.




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