Your eyesight is very precious and taken for granted but it is a gift to most of us.  However this gift can be taken away completely or reduced in effectiveness.  One problem that has come to the forefront lately is treatment, the drugs involved and in the UK, your treatment can also depend on your postcode, your specialist or Healthcare Primary Trust.

Approx 20,000 people are diagnosed with age-related macular degeneration in the UK each year

What is macular degeneration?

Sometimes the delicate cells of the macula become damaged and stop working, and there are many different conditions which can cause this. If it occurs later in life, it is called “age-related macular degeneration”, also often known as AMD.

Broadly speaking, there are two types of macular degeneration or AMD, usually referred to as “wet” and “dry”. This is not a description of what the eye feels like but what the ophthalmologist (eye specialist) can see when looking at the macula.

“Dry” AMD is the most common form of the condition. It develops very slowly causing gradual loss of central vision. Many people find that the vision cells simply stop working like the colours fading in an old photograph. There is no medical treatment for this type. However, aids such as magnifiers can be helpful with reading and other small detailed tasks.

“Wet” AMD results in new blood vessels growing behind the retina, this causes bleeding and scarring, which can lead to sight loss. “Wet” AMD can develop quickly and sometimes responds to treatment in the early stages. It accounts for about 10 per cent of all people with AMD.

AMD usually involves both eyes, although one may be affected long before the other. This sometimes makes the condition difficult to notice at first because the sight in the “good” eye is compensating for the loss of sight in the affected eye.

You cannot wear out your sight, so do not be afraid to continue to use the “good” eye as normal.

The good news is that AMD is not painful, and almost never leads to total blindness. It is the most common cause of poor sight in people over 60 but very rarely leads to complete sight loss because only the central vision is affected. This means that almost everyone with AMD will have enough side (or peripheral) vision to get around and keep his or her independence.

What causes AMD?

At the moment the exact cause for AMD is not known. However there are a number of risk factors which have been identified.

Age – AMD is an age related condition so growing older makes the condition more likely.

Gender – Women seem more likely to develop macular degeneration than men.

Genetics – There appear to be a number of genes which can be passed through families which may have an impact on whether someone develops AMD or not.

Smoking – Smoking has been linked by a number of studies to the development of macular degeneration. It has also been shown that stopping smoking can reduce the risk of macular degeneration developing.

Sunlight – Some research suggests that lifetime exposure to sunlight may affect the retina. It is a good idea to wear sunglasses to protect the eyes.

Nutrition – Research suggests that some vitamins and minerals can help protect against macular degeneration.

Although nothing can be done about age, gender and the genes we inherit, it is possible to control the other more environmental factors that seem to be linked to AMD. Protecting your eyes from the sun, eating a well balanced diet with plenty of fresh fruits and vegetables and stopping smoking may all help to delay the progress of AMD.

What are the symptoms of AMD?

In the early stages your central vision may be blurred or distorted, with objects looking an unusual size or shape and straight lines appearing wavy or fuzzy. This may happen quickly or develop over several months. You may be very sensitive to light or actually see lights, shapes and colours that are not there. This may cause occasional discomfort. AMD is not painful.

Because AMD affects the centre of the retina, people with the advanced condition will often notice a blank patch or dark spot in the centre of their sight. This makes reading, writing and recognising small objects or faces very difficult.

What should I do if I think I have macular degeneration?

If you suspect that you may have AMD but there are no sudden symptoms, you should see your optometrist (optician) or family doctor (GP) who will refer you to an eye specialist. If there is a rapid change in vision, you should consult your doctor or hospital’s Accident and Emergency department immediately.

If you have AMD in one eye, and you start getting sudden symptoms in your other eye, then you should go to your hospital or ask your GP to arrange an emergency appointment, as soon as possible. This will ensure that you get treatment within a few days.

What does an eye examination involve?

First, there will be an assessment of your vision in both eyes. Then you will be given eye drops, which enlarge your pupil so that the eye specialist can look into your eye. The drops take about 30 minutes to work although their effect may last for several hours. Your vision will become blurred for a while and your eyes will become sensitive to light, but this is nothing to worry about. Many patients with AMD do not meet the visual requirements for driving and it is certainly preferable that you do not drive to the hospital for this examination. It would be helpful if someone can come with you to help you home.

What is fluorescein angiography?

In some cases your eye specialist may decide that a fluorescein angiogram will also be needed. This involves taking a rapid series of photographs of your retina with bright flashes of blue light. These photographs give an accurate map of the changes occurring in the macula and help your eye specialist to decide what is the best treatment for you.

For the angiogram you will be given a small injection of special dye in your arm which then travels through your blood stream to your eye. This is not painful but you may feel a bit sick. There are few side effects, although some people find that they are dazzled for a while afterwards. You may also notice that the injection has left your skin with a faint yellow tinge from the fluorescein dye but this soon passes into your urine.

The angiogram helps the ophthalmologist decide what type of macular degeneration is affecting your sight and what can be done to help.

Can macular degeneration be treated?

If you have “wet” AMD affecting the middle of the macula, in some cases, photodynamic therapy (PDT) is possible. This treatment involves infusing a light sensitive drug through your blood stream similar to a fluorescein angiogram. This drug is able to identify the new blood vessels, growing in the wrong place behind the retina, that form with “wet” AMD. A “cold laser” is then shone into the eye which activates the drug stopping the new blood vessels from growing and helping to prevent them causing too much damage to the macular area. This treatment is available on the NHS and has been shown to be effective for many people with “wet” AMD. It can help stop the “wet” AMD progressing to its worst stages though sometimes more than one treatment may be needed.

Are any other treatments available for “wet” type macular degeneration?

New treatments for “wet” macular degeneration are being developed all the time. Anti VEGF therapies are the next group of treatments likely to be available in the UK. There are a number of different treatments being tested but all of them involve an injection into the eye that stops the development of the new leaky blood vessels. This has to be repeated about every six weeks for as long as your doctor thinks is necessary. Like PDT this type of treatment is limited to people whose “wet AMD” affects the middle of the macula and its main aim is to stop “wet AMD” from getting worse. However, in some cases it has been shown to restore some of the vision already lost and it can help with a wider range of people than PDT.

At the moment these anti VEGF treatments are NOT available on the NHS at present. However local Primary Care Trusts can decide on a case-by-case basis whether or not to provide this treatment through the NHS. The treatment may also be available privately. To find out if anti VEGF treatment would help your eye condition and if it is available in your area, please speak to your eye specialist.

More treatments for “wet” AMD are likely to become available in the near future adding to the treatment choices available.  See also Avastin and Lucentis

What can be done to help with “dry” AMD?

At the moment there aren’t any medical treatments for “dry” AMD. There is some research which suggests that vitamin supplements can help slow down the progression of “dry” AMD. They do not restore sight, but they may have a preventative role to play.

How will I cope?

A natural reaction to being diagnosed with AMD is to feel upset or worried about the future. Adjusting to any major change in life can feel difficult, so you may need some support especially at first.

Confidential Help Call RNIB Helpline 0845 766 9999

Drugs & Treatment

Both drugs, Macugen and Lucentis, are licensed for the treatment of patients with all types of wet AMD (as opposed to photocoagulation and photodynamic therapy that can only be given to 20-25 per cent of patients).

Anti-VEGF drugs work by targeting VEGF (Vascular endothelial growth factor), a protein that helps the formation of new blood vessels. In the case of AMD these new blood vessels are unstable and tend to leak fluid and blood under the retina. The resulting scarring then causes irreversible sight loss. The anti-VEGF drugs inhibit the growth of new blood vessels, thereby minimising the risk of scarring.

Treatment with anti-VEGF drugs requires regular injections into the eye. In the case of Macugen six weekly injections are given. In the case of Lucentis the license provides for three four-weekly injections followed by a review every four weeks when the treating consultant decides about the need for further injections. In practice patients are likely to receive eight injections in the first year and six injections in the second year with further treatment depending on the progression of the disease.

Finally, there are increasing discussions about the use of another anti-VEGF treatment that has not gone through proper clinical trials. This treatment, called Avastin, is being used by some ophthalmologists in the UK on a private basis. However, until clinical trials have proven its safety and efficacy RNIB cannot recommend its use. We are looking forward to the results of a clinical trial organised by the National Eye Institute in the United States that is due to start in April 2007 as well as clinical trials due that will take place in the UK.

  Avastin is one of a new group of cancer drugs known as monoclonal antibodies. In the UK it is currently given along with chemotherapy, usually 5FU (fluorouracil) and leucovorin, and sometimes with irinotecan as well. It is given to people who have advanced bowel cancer (cancer that has spread to other parts of the body).

It has been discovered that Avastin cah help considerably with the treatment of AMD but is extremely expensive.  It has also at time of writing not passed clinical trials by NICE (National Institute for Clinical Excellence)

  Lucentis is another drug found to have effectiveness too and is a derivatitve of Avastin.  This drug will probably be licensed for use early next year (2008)

Opthalmic surgeons say that Avastin works better for more patients and is a good alternative to Lucentis if the latter is not helping.

Another problem is the cost, £1000 per dose for Avastin and approx £10 for Lucentis - See why in extract below...

Quote "Genentech, the company that invented Avastin, does not want it used in this way. Instead it is applying to license a fragment of Avastin, called Lucentis, which is packaged in the tiny quantities suitable for eyes at a higher cost. Speculation in the US suggests it could cost £1,000 per dose instead of less than £10. The company says Lucentis is specifically designed for eyes, with modifications over Avastin, and has been through 10 years of testing to prove it is safe.

Unless Avastin is approved in the UK by the National Institute for Clinical Excellence (Nice) it will not be universally available within the NHS. But because Genentech declines to apply for a licence for this use of Avastin, Nice cannot consider it. In spite of the growing drugs bill of the NHS, it will appraise, and probably approve, Lucentis next year.

Although Nice's role is to look at cost-effectiveness, it says it cannot appraise a drug and pass it for use in the NHS unless the drug is referred to it by the Department of Health. The department says its hands are tied.

"The drug company hasn't applied for it to be licensed for this use. It wouldn't be referred to Nice until they have made the first move," said a Department of Health spokeswoman. "They need to step up and get a licence. If they are not getting it licensed, why aren't they?"

New drugs for the condition are badly needed: those we have now only slow the progression to blindness. With Avastin, many patients get their sight back with just one or two injections".

Last update : 25-01-2008 08:55

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