Real Voices interview: Daniel
Meet Daniel, who was denied the drug Lucentis on the NHS to treat his age-related macular degeneration
In this interview, Daniel’s wife Susan speaks for Daniel, who was denied the drug Lucentis. This interview was conducted in 2007. Today, Lucentis is available on the NHS to treat macular degeneration. NICE changed their guidelines on Lucentis because of the public’s response to patients, such as Daniel, being denied treatment.
What drug did you want access to?
Daniel’s got wet age-related macular degeneration (AMD) in one eye, which is caused by blood vessels leaking behind the retina. It’s the biggest cause of blindness in the UK and the USA.
We wanted access to Lucentis, made by Genentech, which shrinks the blood vessels behind the eye. It’s licensed in Europe, the USA and Scotland, but not England.
Who decided that you couldn’t have it?
Our local Primary Care Trust (PCT).
What reasons were given?
They said it’s not available. Then they said they would only fund it if it spreads to the second eye. You have to go blind in one eye ﬁrst.
What did you do?
We fought the PCT for three to four months. We paid for one injection of Lucentis privately. It cost £1560. But one injection didn’t give any improvement: you could need 20 to 24 injections, which would be too expensive for us.
Do you know of other people who did gain access?
Yes. Some PCTs do give Lucentis. It’s a postcode lottery.
Should all drugs should be available to patients?
Yes, deﬁnitely. Whatever you need, breast cancer drugs or eye injections, if you’ve got the disease, they should give it to you.
What if they only provide small beneﬁts?
Yes, because you don’t know until you’ve tried how it will work, especially for something as important as eyes or cancer. You deserve a chance.
How could the NHS keep on top of costs?
If Daniel had had the injections quickly, there would be fewer costs in the long run. If he goes completely blind, there’ll be his beneﬁts claims, hospital visits and my attendance allowance. It’s a false economy, thinking of the here and now, rather than tomorrow.
How can we decide between different deserving causes?
You can’t pick some people to be treated and leave the others. It shouldn’t be like that. If they’ve got the drug, they should give it to you. We’ve worked all our lives, paid taxes and National Insurance all our lives. We need to divert more funds to the NHS. Something else has to go.
How good a job is NICE doing?
It’s not. It’s a bureaucracy, with people sitting in little ofﬁces, giving patients no help or advice. They should ask the Government for more money.