Cystic Fibrosis funding denied

Thought this might interest other BLF members who don't have COPD. Front page news in my local paper says we have researched and found a new drug to help in a form of cystic fibrosis,a serious lung disease, however the cost of £182.000 per annum is prohibitive to the West Midlands Health Authority, who also will not accept an offer of free treatment from the manufacturers for the effected patients. What logic says we will research at a massive cost only to be told the drugs can't be prescribed, seems very depressing news for the patients but quite common news headlines in many cases these days. Would love to here the groups comments on this!!!!!!!!

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  • I am very angry about this I have a young friend (40 years younger) who has CF and I would do anything to be able to help her and many others who have an illness through nothing other than faulty genetics. What makes me cross is the amount of money wasted on elective surgery on the NHS and for some self inflicted illnesses and unfortunately up to a point my own COPD. I also think that the pharmaceutical companies tend to over exaggerate the costs but research is expensive. Another mute point where does funding for research raised from the charities disappear to - maybe too much admin etc.

  • cftrust.org.uk/pressoffice/...

    I expect the lack of funding is because the drug is very expensive and (quote) Kalydeco treats the fundamental defect in people with cystic fibrosis and a specific mutation called G551D which affects about 4% of the CF population in the UK. However the fact it will treat so few, you would think would outweigh the cost.

    Not much consolation for this lovely young woman

    dailymail.co.uk/health/arti...

    Very sad Katie

    Love C XXX

  • I am sorry for the people who will not benefit from the funding for CF particularly for your very young friend jandan. On the other hand I have no qualms about the money being spent on COPD not as I have said before as though there is much evidence of much money being spent on relieving this illness for patients anyway that I can see. I think my 45 years of full time nhs contributions to the government along with the shedload amount i will have contributed to tobacco tax for the same amount of years might cover the paltry inhalers that I am now being prescribed and I suspect am expected to be grateful for- some of my illness I am led to understand is also genetic. As to where the research funding disappears to well I would say too much admin is a charitable thought in itself.

    Also how can any authority justify refusing free treatment for patients -granted there would be restrictions on any free offer numberswise and decisions to be made on the distribution of free amounts etc. however if I were the parent of a child or knew of anyone with CF I could not accept this Health Authority's decision quietly.

    It is perhaps as well I am nearer the stage of leaving rather than entering this realm as the state of affairs you describe really makes me fear for the future.

  • Drug company greed has put this out of reach £182,000 a year !

    How many patients could have lives changed with that much money spent on a group when budgets are not endless it has to be most good for most people to be fair.

  • Thanks for your comments and replies on this very emotive subject. But I have some good news today , apparently yesterday afternoon the health authority did a uturn and the drug companies have agreed to give some of the patients indefinate treatment with this new drug. Thats good news for some of the CF patients in one area isn't it ?(smiles) and the treatment will be free at no cost to the NHS.

  • That is good news and thanks for posting on the uturn. Excellent hope for the patients in that area.

  • Great news Katie - I am so pleased for them.

    XXX

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