age related macular degeneration- good news

[dweezil1968]

Patients to get sight-saving drug

All patients in England suffering from a disease which causes blindness are to get access to a sight-saving drug. Lucentis treats age-related macular degeneration, the leading cause of sight loss in the country. The drug is already available in Scotland, while Wales and Northern Ireland have said they will fund it.

The National Institute for Health and Clinical Excellence (NICE) had originally said patients should wait until they went blind in one eye. The suggestion, made last summer, caused an outcry from campaigners and doctors, prompting a U-turn by the NHS advisory body in December. The announcement confirms that draft recommendation and comes after a unique agreement between NICE and the drug's manufacturer, Novartis. Under the deal the NHS will only fund 14 injections, with the cost of any more being met by manufacturer Novartis in a scheme dubbed "dose capping". But the process which has led to the recommendation has caused much controversy.

With clinical trials showing impressive results, some primary care trusts (PCTs), which decide on funding on a local level in the NHS, have been paying for the treatment ahead of final NICE approval. This has prompted accusations of a postcode lottery in the NHS and led to legal action against PCTs which were not paying for it. In one recent case, three Warwickshire pensioners ended up in the High Court, winning an out of court settlement last month.
Steve Winyard, head of campaigns at the Royal National Institute for the Blind, said: "We've been waiting for this for over two years. "It is a victory for thousands, bringing overwhelming relief to desperate people across the country. "Finally the torment faced by elderly people forced to either spend their life savings on private treatment or go blind, is over."

Age-related macular degeneration (AMD) comes in two forms - wet and dry - with the dry form being much more common. However, the wet type is more aggressive and is responsible for about 90% of blindness caused by the condition. Almost 20,000 people a year are diagnosed with wet AMD in England. NICE chief executive Andrew Dillon described Lucentis as an expensive drug - it costs more than £10,000 for each eye treated. But he added: "That cost needs to be balanced against the likely cost savings. "AMD results in reduced quality of life and increased risks of illness, particularly in relation to accidents, and psychological ill-health." Mr Dillon said the cost-sharing deal could potentially mean significant savings for the NHS.
He expressed sympathy for PCTs facing pressure to fund many different expensive drugs from finite budgets.

Mr Dillon defended the length of time it took NICE to reach a final decision, but said it was important all parties had the opportunity to have their say. However, he said: "I am genuinely sorry that it has taken us so long to get to this point. Lessons could be learned by everybody involved."
BBC today
good news for our fellow eye sufferers

[Andrew MacLean]

I heard that on the wireless this morning! This brings England into line with the rest of the UK. Good news indeed for fellow eye-sufferers, and possibly even for some of us (having KC does not render us immune to AMD).

Andrew

[rosemary johnson]

Yes, good news indeed.
What's particularly interesting is that the coverage I've been hearing onthe radio news today is that NICE have been claiming that the reversal of their previous decision came about because they'd calculated that the cost of the Lucentis could be offset by the extra costs that wouldn't now be incurred from peple going blind and needing support to cope with being blind, possible nursing home admissions, psychological care, etc etc.
Aren't we all in a parallel situaion? - wihtout lenses, or maybe these days without CXL/intacs, how much more would be e costing the national economy if we couldn't keep holding down our jobs and were claiming benefits for bbeing blind, unemployed, even more specialist equipment, etc etc??
Let's hope this is a calculation that can be done more generally then.
Rosemary