Sunday, 12 October 2008

'It's like having a death sentence hanging over me'

Sam Khan, 42, from London, has suffered from pulmonary hypertension – high blood pressure in the lungs – since the age of 25. This potentially fatal condition causes extreme breathlessness in around 1,500 people in the UK. In March 2008, Nice ruled against a whole class of existing drugs called prostacyclins, leaving Sam with a two-month supply of hers, which cost £37,000 per year.

Ms Khan said: "My condition has reached the stage that the tablets alone are not enough. I need the inhaler six times a day, but then I can work and contribute to society. Without it, I can barely walk three or four steps. When Nice decided the drug wasn't cost effective, I was devastated. The fact it could be taken away is like having a death sentence hanging over me. I know I won't be able to work any more if Nice doesn't reverse the decision as my PCT [primary care trust] has refused to pay for it. I understand the reality behind what Nice has to do, but when you're in the middle of it, it is difficult. I don't want to live for ever, or even to 75 with this illness, but I want to be an active member of society while I reasonably can."

Article in The Independent: The price of life – it was £20,000. Now NHS drugs body recalculates here