After years of little or no progress, there’s a new buzz around age-related macular degeneration (AMD), with breakthroughs in identifying causes, as well as some potentially exciting new treatments and a glimmer of hope of prevention on the horizon.
AMD is the most common cause of sight loss as we get older. It affects some 513,000 people in the UK – one in 20 aged over 60 and one in eight over 80. The condition causes loss of central vision, used for reading, watching TV, driving and recognising faces.
‘Advanced AMD can rob people of their independence and confidence. If you can’t read your own bills, you can’t handle your own finances. Cooking becomes hazardous and trips or falls are more likely.’ says Cathy Yelf of the Macular Society, the information, support and fund-raising charity.
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Treatment, at least for the more aggressive wet AMD, involves injections of drugs into the eye, which can stabilise and even restore some sight for certain sufferers. The latest of these, Eylea (aflibercept), received the stamp of approval from the National Institute for Health and Clinical Excellence (NICE) in August last year. But, while such medications have revolutionised treatment, they do involve four to six weekly hospital visits and run an, albeit small, risk of eye infection.
As writer and biographer Jonny Gathorne-Hardy, 80, who was diagnosed with wet AMD six years ago, explains, ‘They don’t hurt, but your eye feels bruised and it is a real nuisance having to go to hospital so often.’
Jonny is one of the first UK patients to benefit from a new one-off treatment that uses precisely targeted X-rays to seal lesions in the back of the eye caused by leaky blood vessels:
‘It took only 20 minutes and was totally painless. Tests show that my AMD hasn’t progressed in that eye. In fact, I can see slightly better and I haven’t had an injection for two years now. I’m delighted.’
Doctors using the treatment, known as Oraya therapy, are cautiously optimistic. ‘It’s not a cure and it’s not for everyone but, if you are suitable, it can reduce and sometimes eliminate the need for injections by around a third to a quarter. And in a few patients, such as Jonny, it can even lead to a small improvement in vision,’ says Tim Jackson, consultant ophthalmic surgeon at King’s College Hospital in London.
Currently the treatment is available only privately at a cost of around £5,000 an eye. However, it is hoped that it will become available on the NHS and the California-based company Oraya is currently working to that end with several NHS hospitals aiming to establish centres of excellence by the spring.
An implantable miniature telescope, smaller than a pea, that projects an image onto a part of the retina undamaged by AMD is a revolutionary new surgical procedure for people with end-stage wet or dry AMD. The ‘telescope’ is placed in the better of the two eyes and the person has to learn to use the implanted eye for seeing things straight ahead and the other eye for peripheral vision. So far only a handful of people in this country have undergone the CentraSight procedure (again, available only privately at a cost of £20,000), although it’s been used in the US for some time.
It won’t cure AMD and it can help only some people, but says Nick Wilson-Holt, consultant ophthalmologist at the Royal Cornwall Hospital (Treliske), who has carried out the operation, ‘Patients report better vision and a greater ability to do everyday things such as preparing food and watching TV, as well as being able to see faces better.’
With so many promising new treatments becoming available, the outlook should be bright. However, all is not rosy in the AMD garden. The RNIB and the Macular Society both published reports in November 2013 highlighting the fact that eye clinics are so overstretched that sufferers are missing out on vital early diagnosis and treatment.
Shockingly, 80% of staff in eye-care clinics canvassed by the RNIB said that their department could not meet current demand, 94% said they would be unable to meet rising future demand, and 37% said patients were sometimes losing sight because of lack of capacity. According to the Macular Society, 66% of NHS trusts are not meeting official treatment guidelines, and more than 12% of consultants contacted by the charity said their service was so poor that patients were unnecessarily losing their sight.
The charities are calling for the appointment of an eye care ‘czar’, a National Clinical Director, to champion the needs of those with eye problems as we already have for cancer, heart disease and stroke. ‘Eye-care services have been neglected for too long, partly because no one is fighting their corner in the NHS,’ says Clara Eaglen, head of policy and campaigns at the RNIB.
Although it may not come naturally, be prepared to push for your rights. ‘You should be referred rapidly to the hospital eye clinic and be diagnosed within a week and treated within one or at most two weeks. If this doesn’t happen, chase it up – your sight could depend on it,’ says Clara.
Diagnostic blood test
Happily, on the prevention front things are looking brighter. ‘The biggest breakthrough has been the discovery that AMD can be due to faulty genes,’ says Professor Paul Bishop, consultant ophthalmologist at Manchester Royal Eye Hospital and chair of the Macular Society’s Research Committee.
‘It’s complicated and the degree to which family history affects risk varies, but if your parents had AMD you have a higher risk. The good news is that, as of this year, we can work out someone’s risk by taking a blood sample and analysing their DNA together with lifestyle factors that are known to raise AMD risk,’ he adds. In the future this may allow us to develop treatments for people who are at risk of developing AMD and prevent them from getting it. Although you can’t yet go to an optometrist or GP and ask for this test, you almost certainly will be able to in the next few years.
Environmental factors and an individual’s lifestyle can also be significant factors in developing AMD. Dr Heping Xu, researching the role of inflammation in AMD at Queen’s University, Belfast, says, ‘Smoking is especially damaging to the eye’s photoreceptors (the cells that respond to light) and a healthy diet with plenty of antioxidants may reduce damage.’
Two large trials in the US (Age-Related Eye Disease Studies – AREDS 1 and 2) have shown that certain vitamins, minerals and the plant nutrients lutein and zeaxanthin can reduce the risk of people developing sight loss from AMD. However, cautions Tim Jackson, ‘Supplements are not proven to reduce the risk of AMD in patients without early AMD.’ Your eye-care professional or doctor can advise you.
Making the most of what you’ve got
For people who already have AMD, meanwhile, coaching in ‘eccentric viewing’, a technique that helps people with central vision loss to make the most of what eyesight they do have, can be a great help.
Says Cathy Yelf, ‘People with AMD often need to relearn how to do everyday tasks. We coach people to look slightly to the side so as to bypass the blind spot. Although it doesn’t work for everyone, many people learn to read well enough to be able to read bills or watch the TV more easily.’
AMD - THE FACTS
AMD affects a tiny part of the retina called the macula, which is used to see detail and things straight ahead.
- AMD causes problems with central vision, but doesn’t lead to total sight loss and isn’t painful.
- Dry AMD, the most common type, in which the light-sensitive cells of the macula slowly break down, causes gradual loss of central vision.
- In wet AMD, fragile, leaky blood vessels grow under the macula, causing bleeding and scarring. This can lead to sudden loss of central vision.
BE EYE AWARE
1 in 3of those questioned in a recent YouGov survey had never heard of AMD.
53% wouldn’t seek help straightaway if they experienced tell-tale symptoms. You should see an optician or your GP if you experience difficulty with reading small print even with reading glasses, find straight lines look wavy or distorted, notice that your vision isn’t as clear as it used to be.
FIND OUT MORE
For the Macular Society, visit macularsociety.org or call the helpline on 0300 3030 111. The Society’s two Essential Guides to wet and dry AMD are invaluable. For the RNIB, visit rnib.org.uk or call the helpline on 0303 123 9999.
There is no definitive proof that you can prevent AMD, but the following measures may help to modify risk…
Eat plenty of antioxidant–rich green leafy veg, especially kale. Or consider taking supplements containing antioxidant vitamins C and E, zinc and the phytonutrients lutein and zeaxanthin. But do check with your GP first.
Eat oily fish such as mackerel, salmon and herring at least once a week. Some, although not all, studies have found that a diet rich in omega-3 fatty acids, found in oily fish, may be beneficial.
If you smoke, quit now. Smokers are three times more likely to develop AMD than non-smokers. This increases to an eightfold risk in those with a family history of AMD.