By Ehi Ekhator
Parents of Cystic Fibrosis sufferers took to the street of London on Monday calling on the government to make new treatment available on the NHS.
In 2o16, the National Institute of Clinical Excellence acknowledged drug Orkambi as a viable treatment for CF but refused to recommend it within the NHS on cost grounds.
Cystic Fibrosis is a genetic condition that causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
The drug, unlike many drugs in the system which only treat the symptoms, is said to treat the cause of Cystic Fibrosis, as shown in clinical trials. It improves lungs function and respiratory symptoms in people with the genetic condition.
If children with Cystic Fibrosis start taking Orkambi at an early age, they could have a near-normal life expectancy, studies had shown.
Orkambi which was created by a pharmaceutical company Vertex acts to mimic the missing gene that causes the diseases, instead of being an antibiotic.
One of the protesters at the NHS office in Elephant and Castle spoke to our correspondent at the scene.
She said “Orkambi is the first drugs that actually treat the root cause. It is available in Europe, Ireland and we don’t have it in the UK. Two young people die every week from Cystic Fibrosis and this drugs can give them an extra 25 years of life and it can stop the disease. We think it is unfair, we all have children and love ones with this ailment.
“It was licensed three years ago and that is when it became available in various of the European countries. We have children here that their illnesses progressed considerately over those three years and it won’t correct any damage they have done but it can hold it
“The government won’t pay for it. If other countries can afford it, why we can’t afford it in the UK?”.