How can you put a price on my son’s life?
TODAY, whatever the weather, supporters of cystic fibrosis sufferers will be showing their support outside Westminster at 4.30pm, the start of a Parliamentary debate triggered by a 100,000plus petition.
This is about patients — mostly children or young adults — urgently needing innovative, precision medicines to keep them alive and how the system is failing them. In short it’s about children such as my seven-year- old son who face a difficult and short life without these drugs, the disease being a genetic disorder which progressively damages the lungs.
There is a drug, Orkambi, that will alleviate symptoms, slowing and halting the decline of sufferers to the point where they can lead reasonably long, happy and useful lives.
unfortunately, because of its cost — around £100,000 per patient per year — it is only given on compassionate grounds. This is often when lung function is reduced to 40 per cent, when the patient will need a lot of support and care and may start suffering from extra, dangerous complications — in other words too late to give a real chance of a normal life.
Orkambi targets the dysfunctional protein that causes CF and was refused funding two years ago on the basis of cost as calculated via the NICe method. This ruling, if it continues to stay in place, means that thousands of CF patients’ lives will be limited.
Orkambi is available in Ireland, Germany, Greece, Italy, Austria, Denmark, the Netherlands and Luxembourg, yet not, except in compassionate cases, the uK.
Our petition calls on the Government not only to instruct NhS england to fund Orkambi, but to broker negotiations for a better deal urgently with the manufacturer, Vertex.
I implore politicians and your readers to support this cause and give hope to the thousands of CF patients and their families who rely on these breakthrough drugs to extend their children’s lives.
At the end of our meeting outside Parliament, we shall be having a candlelit vigil for those we call ‘the CF Angels’. These are the children who have died waiting for an effective treatment, which now exists, but the Government will not fund.
But then, how can NICe put a price on my child’s life? CHRISTINA WALKER,
Horam, E. Sussex.
Our aid promotes peace
STePheN GLOVeR (Mail) says we are complacent about defence spending. he then, like many others, advocates taking money from our aid budget.
The International Institute For Strategic Studies puts our 2017 defence spending at £36 billion — the highest of any Western country apart from the u.S.
What happened in Salisbury was a disgrace — but we have the support of other nations, especially our Nato allies.
having served in the RAF and worked on aid programmes, I consider the latter to be a major contributor to world peace. They could also, eventually, eliminate any need for emigration.
MERVYN WILLIAMS, Waterloo, Huddersfield.
Shadowy Chancellor
JOhN McDONNeLL replied to the Chancellor’s Spring Statement and concluded by referring to the sad case of the dead rough sleeper.
he turned out to be a deported foreign convicted child abuser, who had been offered shelter.
If that is the focus of Mr McDonnell’s concerns, the Shadow Chancellor has a very twisted set of priorities. DAN HARTLEY, Solihull, West Mids.
Sunset on Sunlight
LORD Leverhulme, of Thornton hough on the Wirral, will be turning in his grave at the terrible news that unilever, the firm of which he was so proud and its manufacturing base in Port Sunlight is to be headquartered in the Netherlands.
Another of our fine manufacturing companies being lost to foreign countries. They claim, like Cadbury, that jobs will not be lost — watch this space. DAVID BECK, Waterlooville, Hants.
EU’s elastic laws
I AM confused. I saw an announcement that France, during a state visit by President Macron, has signed a major trade deal with India. France is still in the eu.
Yet during the Brexit talks, uK citizens were told the uK cannot negotiate its own trade deals until we leave. One law for those staying and one for us as we leave?
PAuL CRAIG, Wembley Park, Middx.
Legal sniping
OuR troops are to be immunised against anthrax. Good. however, they need protection from an equally dangerous condition, namely, predatory lawyers.
The fact that our courageous Government persists in allowing these vultures to ply their trade is a tragedy for the Forces personnel sent to do the country’s bidding. Our Forces must have confidence that they have the nation’s full, responsible backing.
We must accept that in the heat of war unpleasant events will occur which, in the cool light of day can be condemned.
It is a disgrace that personnel can be harassed and hounded, seemingly for ever.
MICHAEL C. WEEKS, Marston Green, Birmingham.
Salute to a star
FOLLOWING the death of Stephen hawking, thank you, Daily Mail, for the article ‘ In his own wonderful witty words’. If, when you read these words, you didn’t hear Prof hawking’s ‘voice’ speaking, then you have no soul. PETE WILLIAMS,
Hayes, Middx.
Join up for self-respect
MRS MAY needs to spend more on defence. She is throwing Great Britain away.
I see young people drunk and disorderly in the streets at night and in the early morning.
They need to join her Majesty’s Forces for the discipline, camaraderie and sense of purpose, instead of wandering useless, the product of lack of family life.
The united Kingdom matters — and young people need it.
Mrs C. CHANNELL, Bath.