Girl, 6, writes heartbreaking letter to Theresa May asking for life-saving drug
A six-year-old girl has written to Theresa May asking if she and her sister can have a new drug that could potentially prolong their lives.
Both Imogen Fare, 6, and her two-year-old sister Annabelle suffer from cystic fibrosis (CF).
Imogen, who lives with her family in Conwy, Wales, has written to Theresa May asking for access to the drug Orkambi.
She wrote: Dear Mrs May, I have C.F. so does my little sister Annabelle. We would really like Orkambi to keep us well and help us live a long and happy life.
We both like swimming and playing outside love from Imogen and Annabelle.
The life expectancy for half of all CF patients in the UK was estimated to be 37.4 years in 2008, but babies born today can expect to live longer because treatment is improving.
Orkambi is currently not available as it costs £104,000 per patient every year.
The drug targets a mutation that around 50% of people with cystic fibrosis in the UK have and has been shown to improve lung health and reduce hospitalisations, according to the Cystic Fibrosis Trust.
what is cystic fibrosis?
Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system.
This causes lung infections and problems with digesting food. Treatments are available to help reduce the problems caused by the condition and make it easier to live with, but sadly life expectancy is shortened.
Cystic fibrosis is a genetic condition. Its caused by a faulty gene that affects the movement of salt and water in and out of cells.
This, along with recurrent infections, can result in a build-up of thick, sticky mucus in the bodys tubes and passageways – particularly the lungs and digestive system.
Cystic fibrosis tends to get worse over time and can be fatal if it leads to a serious infection or the lungs stop working properly.
Currently, about half of people with cystic fibrosis will live past the age of 40.
Imogens mum Alison, 36, said the family are trying to get as many children with CF as possible to write to Mrs May before the letters are hand-delivered to 10 Downing Street on May 16.
She said: Orkambi is a pioneering drug from America but its not currently provided by the NHS except in rare cases on compassionate grounds.
The reason we are keen to Orkambi to be widely available can slow decline in lung function – the main cause of death among people with cystic fibrosis by as much as 42%, which is life-changing.
She believes the drug is not distributed more widely because of the cost.
My girls have to each take 35 tablets a day, Annabelle takes it in liquid form, said Alison.
They also to have physiotherapy everyday and Dave or I have to clap their chest several times a day to loosen mucus in their lungs and help them drain.
Its really tough.
Just the other day Imogen said to me that she wished she could chose only one tablet to take everyday rather than having to take so many, it hurts when she says things like that.
Both girls have 100% lung capacity at the moment as we keep on top of the treatments, but in years to come Orkambi could really help them.