Aontú deputy leader Councillor Anne McCloskey has welcomed the news that the Department of Health has confirmed its intention to make Cystic Fibrosis drugs Orkambi, Symkevi and Kalydeco available to eligible patients in the north.
The announcement follows the pricing agreement reached last week between the NHS and Vertex Pharmaceuticals, manufacturer of the drugs. This agreement stipulates that Vertex Pharmaceuticals must offer an equivalent pricing agreement for the north.
Cllr McCloskey stated:
“People with cystic fibrosis have a condition caused by a faulty gene inherited from both parents. It causes problems with the lungs, digestive system and other organs, by affecting the body’s cells ability to produce healthy mucous. Children who suffer from CF have frequent chest infections and fail to thrive.
“Recurrent episodes of pneumonia damage the lungs and cause a vicious cycle of illness, lung damage and increasing disability.
“Likewise, the same mucus that fills the lungs also obstructs the digestive tract and the pancreas, causing those with the disease to be unable to absorb necessary nutrients, leading to failure to thrive. There are a variety of other difficulties brought on by cystic fibrosis. These can include arthritis, peptic ulcers, salt depletion, and delayed puberty.
“For children and families suffering from CF, the decision to provide these drugs is indeed life-changing news. As a trainee doctor, I worked for a while in the CF ward in Children’s Hospital in Belfast and saw at first hand the courage and fortitude of these youngsters, and their families. This is indeed good news for them. There are so many diseases for which we haven’t the tools to make a real difference, but where proven effective treatments exist, it is right that they should be provided by the NHS.
“Although the health budget in the north is under severe pressure, with many competing demands being made for funding, these new treatments will be of great benefit to patients with Cystic Fibrosis and their families.”