the scottish medicines consortium — which recommends which drugs the scottish nhs should fund — willsymkevi. the drugs — which cost £100,000 per year per patient — are currently only available on the nhs in exceptional circumstances. campaigners say the drugs can slow the decline in lung function, which is the main cause of death among people with cystic fibrosis, by 42%. if the drugs are approved today in scotland, it's likely to put pressure on the nhs in englald, northern ireland and wales to provide the treatment. let's talk again now to christina walker, whose nine—year—old son luis has cystic fibrosis. they were on our programme in february, pleading for this drug to be made available across the country. mrs walker says her family could move to scotland if they approve this drug. also here, rebecca cosgriff the director, of the cystic fibrosis trust. in glasgow, the snp mp marion fellows, who's campaigned to make these drugs readily available on the nhs across the uk — her granddaughter has the condition and also in glasgow is callum kelly, who's 29 years old and started taking

the scottish medicines consortium, which consortium, which recommends which drugs these cottage and itthe reckoned drugs orkambi stop there currently only available on there currently only available on the nhs and exceptional circumstances. campaigners say that the drug cancel the decline in lung function, which is the major cause of death in people with cystic fibrosis. it can reduce by 42%. with me now is david ramsden —— chief executive of the cystic fibrosis trust. my my heart goes out to people who have been waiting for the stroke. as you rightly point out, cystic fibrosis isa rightly point out, cystic fibrosis is a progressive condition and that means is a progressive condition and that m ea ns every is a progressive condition and that means every element of this delay means every element of this delay means that people are at more risk of deteriorating and we know that some people have indeed died. given the cost of it and the fact that resources , the cost of it and the fact that resources, with the best will in the world, ifind it, surely it has resources, with the best will i

the scottish medicines consortium, the equivalent of nice said it had powerful testimonies from doctorsut 65 patients who get it on an individual basis but the cystic fibrosis trust we re basis but the cystic fibrosis trust were saying it could have helped up to 330. but when you multiply it by 100,000, it's a significant chunk of the health budget, i suppose?” com pletely the health budget, i suppose?” completely agree and i think we all need to remember, taking emotions out of it, of course we are asking for a lot of money from the nhs. but when users put across to you in a way such as cost effectiveness and value for money, it hurts. it hurts the sufferers and it hurts our families, because you basically feel you're being told you're worthless and you are not worth their place in society. they are not going to pay for us to be able to breathe easy. soi for us to be able to breathe easy. so i think they need to maybe work on their terminology a bit better because it has upset people today. on their terminology a bit better because it has upset people todaylj can understand. it sounds