The NHS and Treatment for Wet AMD
and Other Causes of CNV (Choroidal Neovascularisation)

Please note that the treatments described below are all for recently developed forms of Wet Macular Degeneration and are effective in the early stages – i.e. only within the first few months of onset.  Currently there are no treatments available for Dry forms of Macular Degeneration (such as Dry AMD, Stargardt’s MD etc).  For Dry conditions laboratory work is taking place on stem cell therapy and also gene therapy.  Progress is encouraging, but viable treatments are still probably a few years away

Choroidal Neovascularisation (CNV)

CNV is a symptom of Wet Age-Related Macular Degeneration (Wet AMD).  It is also a symptom of several other retinal conditions, such as Macular Oedema, Myopic Macular Degeneration, Sorsby Fundus Dystrophy, Doyne’s Macular Dystrophy, PIC and several others.  CNV is the growth of new blood vessels at the back of the eye, which can cause distorted vision such as uneven/wavy areas or the sudden appearance of a dark patch.  Treatment options are available if caught early (in the first few weeks), before the development of scar tissue.

The main treatments are drugs (Lucentis, Avastin) and laser (PDT – Photo Dynamic Therapy).  Lucentis and Avastin both work in a similar way (they are ‘anti-VEGF’ drugs which means they inhibit the growth of abnormal blood vessels). 

Advocacy Support From The Macular Disease Society

All patients are advised to seek treatment within the NHS.  The Macular Disease Society provides active support for people having difficulty getting treatment within the NHS.  The patient’s consultant must have recommended the treatment for the patient and be willing to apply to the local NHS authority for funding approval.  For advocacy support contact the Macular Disease Society Helpline on 0845 241 2041.  Click here for details of how to apply for NHS treatment.

Lucentis

Made by Genentech in the USA, sold in the UK by Novartis.  On Wednesday 27th August 2008 NICE approved Lucentis for use in the NHS in England (it had already been approved by the authorities for Scotland, Northern Ireland and Wales).  The approval is for Wet AMD only, it does not include the other conditions which cause CNV and a patient’s ophthalmologist may have to apply locally for approval to give treatment.

There is an initial course of three injections, each one month apart.  After the third injection the maximum benefit will often have been achieved.  Follow-up injections are then required as advised by the consultant.  Currently there is limited data on how long treatment must continue for.

If treatment is paid for privately, Lucentis typically costs between £1,500 and £2,000 per injection.  It is not possible to mix NHS/private treatment i.e. ‘top-up’ NHS treatment by paying for the drug cost only and asking the NHS to meet the other costs.   Note however that it is possible to move back into the NHS after having treatment privately,

Avastin

Also made by Genentech in the USA.  It is licensed as a cancer treatment drug and sold in the UK by Roche.  As the manufacturers have not applied for Avastin to have a licence for use in the eye, it could not be considered by NICE to treat Wet AMD or any other cause of CNV.

Avastin is being used extensively to treat CNV in the United States and throughout the world.  Prior to Lucentis being available in the UK on the NHS, Avastin was also used extensively in the private sector.

There is some NHS use of Avastin, particularly to treat causes of CNV other than Wet AMD e.g. Myopic Macular Degeneration.  Typically the consultant has to apply locally for approval to use it.  If a consultant wants to treat a patient’s CNV with Avastin the Macular Disease Society provides active support in seeking approval.

If treatment is paid for privately, Avastin typically costs between £400 and £1,000 per injection.  It is not possible to mix NHS/private treatment i.e. ‘top-up’ NHS treatment by paying for the drug cost only and asking the NHS to meet the other costs.  Note however that it is possible to move back into the NHS after having treatment privately.

In the UK the NHS is putting substantial funding into a clinical trial which will compare Lucentis with Avastin.  About 25 hospitals are involved in the trial and they will be monitoring the effectiveness and dosage regime of about 20-30 patients at each of the trial centres over a 2 year period.  The trial is called IVAN.  More details may be found on the trial website  www.ivan-trial.co.uk .

PDT (Photo Dynamic Therapy)

PDT is a laser based treatment.  The treatment uses a light sensitive drug called Visudyne in conjunction with a ‘cold’ laser beam to destroy the developing leaky blood vessels.

PDT is available on the NHS and existed several years before Lucentis and Avastin were developed.  The use of PDT is reducing, but is being considered for use in combination with Lucentis or Avastin.