Bexley singer releases song in support of UK cystic fibrosis community
PUBLISHED: 07:00 30 May 2018 | UPDATED: 10:15 30 May 2018
Bexley-based vocalist Taylor Notcutt, who studied jazz voice at Trinity Laban Conservatoire of Music and Dance, has released a new single 'Breathe With Me' in support of the UK cystic fibrosis community.
The release of the song is very timely as the fight against cystic fibrosis is currently at a crucial point.
Taylor said: “I became involved in this project because a friend of mine, conductor Ben Knowles, knows a young girl who has cystic fibrosis.
“The girl is having a very difficult time and because a drug that can help her is not currently available in the UK, and her entire family may have to relocate to America.
“If you listen to the lyrics, they are asking people - the general public - to think about how difficult life would be if you had to struggle to do the one thing most of us take for granted every day – breathing.”
New precision drugs that for the first time, have the potential to lead to the disease becoming a chronic but manageable condition, rather than a life-threatening one, are being developed.
One of these is Orkambi, a precision medicine that nearly half of people with cystic fibrosis, including children aged six and over, could benefit from in the UK.
Orkambi is not a cure, but it has been found to slow decline in lung function – the most common cause of death for people with the illness.
It has also been shown to reduce chest infections requiring hospital treatment by up to 61pc.
Orkambi received its European license in November 2015, and in June 2016 the UK government agency the National Institute of Health and Care Excellence (NICE) recognised Orkambi as an important treatment.
They did not recommend the drug though, on grounds of cost-effectiveness.
This means it is unavailable to most people with cystic fibrosis across the UK.
In January, a petition for access to Orkambi gained over 100,000 signatures in just over 10 days and led to a parliamentary debate at Westminster Hall, attended by a high turnout of 60 MPs from around the country.
Taylor, who is from Welling, added: “Try breathing through a narrow drinking straw for just a minute, while pinching your nose – that will give you some idea of how bad this disease can get.
“If the public get some idea of having to live like that every day, then I am sure that they will want to help too.”
Download Breathe With Me in aid of the Cystic Fibrosis Trust at: https://store.cdbaby.com/cd/taylornotcutt.