Big pharma is denying children like my son vital drugs. So I've set up a buyers club | Robert Long

The US company Vertex has put a ludicrous price on a new cystic fibrosis drug. But we've found a way to bypass its greed

A few weeks ago I sat in a meeting room in east London nervously waiting the arrival of two representatives from Gador, an Argentinian drug company. It's no exaggeration to say that my child's life could be shaped by the following few hours.

Nearly 10 years ago, shortly after my son Aidan was born, we learnt that he had cystic fibrosis (CF) - a life-limiting genetic condition that affects the lungs and other major organs. It is difficult to process the joy of parenthood, tempered by the confusion, sadness and frustration of such a diagnosis. But with time we came to terms with the news and the additional restrictions and medical attention CF imposes on you.