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The Price of Life Oct 9. 2012 | Comments (32)

Tim Wotton is 41 years old and has cystic fibrosis. He lives in London with his wife and five-year old son, and is a keen blogger, his blogs are read by over 30,000 people.  Today he is blogging about Kalydeco, encouraging people to sign the CF Trust's petition. You can view previous blogs by Tim here: http://timwotton.wordpress.com/2012/08/17/race-for-life.



Tim WottonThe price of life
I'm currently at home having my IVs, and the draining effects of cystic fibrosis (CF) have reminded me how relentless this condition is and how at times it can control my life. But it has given me time to look into this new super drug Kalydeco - the first medicine to treat the root cause of CF. This is currently being reviewed for prescribing on the NHS and, as is typical, the delay on getting this to clinics is about cost. Even though I don't have the G551D mutation that would benefit from this drug right now, I know of some fellow patients that do and I know they are frustrated with having this carrot dangled in front of them.

For the record, I have the most common type of CF mutation, F508Del, but I want to help because the prescribing  of Kalydeco would help me in the long run. I have decided to sign the CF Trust's Kalydeco e-petition because I now know how important this test case is. Kalydeco only treats patients with CF who have at least one copy of the G551D mutation, there are around four per cent in England, about 350 patients who would benefit from this medicine. This is the first treatment that is genotype specific and there are further trials using Kalydeco in combination with a substance called VX-809. The first results from those trials have shown a potentially positive impact on the more common F508del mutation, which 90 per cent of people with CF carry, like me. After 41 years battling with CF taking 40 tablets a day and many other treatments, I can't imagine having only two little pills to take a day. It would also have a massive impact on my life, hopefully prolonging it so that I can enjoy a better quality of life with my wife and son.

I want this to be accepted on the NHS, so that the new wave of genetic medicines can benefit even more people with CF.

How can you help?

Please sign the CF Trust's e-petition.

  1. # jason burton on 9 October 2012 at 9:47:

    i have a 10 year old boy who has cf and i say the guvament should get this drug on the nhs a.s.a.p so people whoi suffer with cf could benifit from it

  2. # Michelle on 9 October 2012 at 10:09:

    I have a daughter with CF (and also Anorexia at the moment) she is 17 and although I'm not sure what type of mutation she has any advancement and testing of a new drug would certainly be a great benefit to many sufferers. Keep up the good work and good luck reaching the 9000 !

  3. # Margaret Crawford on 9 October 2012 at 11:27:

    I have 2 beautiful grandsons fighting cf this drug should be on the nhs so not only our loved ones can benifit but all cf patients all over the world .

  4. # Linda Black on 9 October 2012 at 11:36:

    I want to wish you good luck with the petition. My son Darren Keen, was the first person in the world to take part in Gene Therapy trials, there was so much opposition to this at the time. I am so proud of my son Darren for having the courage to take part, knowing it would never be of any benefit to him. He had a heart and lung transplant, which was successful even though he lost his fight 10 months later. You are all so brave in your quest, I will encourage all of my family and friends to sign this petition. xx

  5. # April Gillies on 9 October 2012 at 12:25:

    I have a daughter with CF Delta F508 defect like you Tim. I think everyone with CF should have access to this drug. Hopefully soon it will benefit those with Delta F508. I wish you luck in your campaign! Stay strong!!

  6. # Debi on 9 October 2012 at 12:26:

    I have a 17 year old Daughter with CF - F508del mutation, and a niece in her 20s with CF who has just had a lung transplant and is doing great.
    Like you they both take so many pills each day and nebulisers, so yes this should be available on the NHS. I would love to see any CF sufferer with a better quality of life.

  7. # Tina Reach on 9 October 2012 at 13:31:

    This drug should be made available. In January 2008 my 24 year old daughter (who had CF)
    died whilst waiting for a transplant. I do want any family going through the pain that we are going through still 4 years later.

  8. # Joanne O Driscoll on 9 October 2012 at 13:51:

    My son Ben has cf he is 3, del F508 also, Gooduck.

  9. # christine mccamphill on 9 October 2012 at 17:49:

    Please help save people with cf

  10. # Samantha Clough on 10 October 2012 at 9:35:

    This new drug should be made available if it means giving people a better quality of life.

  11. # Lisa on 10 October 2012 at 9:44:

    PLEASE SAVE PEOPLE WITH CF!
    THEY NEED THE BEST DRUGS!

  12. # Helen on 10 October 2012 at 18:33:

    My hubby has CF, and takes between 40 & 60 tablets per day plus 3 inhalers. The cost saving of him reducing to 2 tablets a day would surely pay for Kalydeco in the long run, and would it reduce the need for the number of hospital appointments and admissions??? Another cost saving ...

  13. # Tessa Morrish on 10 October 2012 at 20:55:

    I have a 32 year old daughter with CF. Although she does not have the correct genetic mutation to benefit from this new drug there are 350 people in this country who do and they desperately need this. In time it will be available for other mutations too we hope and all CF suffers will hopefully then see their lives transformed. The strain that CF puts on those who suffer from it, and on those who love them and watch them suffer , is intolerable. CFdestroys lungs AND lives. Please please make this new breakthrough drug available NOW.

  14. # Mrs Morrison on 11 October 2012 at 8:26:

    The Government spend millions on methadone which rarely helps addicts get off drugs. Most use it as a top up. CF is an illness which is not self inflicted. The toll of treatment is awful for patients. This drug needs to be prescribed asap to those who will benefit from it.

  15. # Claire McCowan on 15 October 2012 at 14:45:

    I have a few friends that have been affected by CF and I very much in support of anything that helps people have a happier, longer and more comfortable life.

  16. # Tom on 15 October 2012 at 14:51:

    Do the right thing.

  17. # Alex Ferguson on 15 October 2012 at 15:05:

    Do the right thing. You need to cure CF, or at least make it better.

  18. # Niki Hutchinson on 15 October 2012 at 15:22:

    I will support anything that gives those suffering from CF the help they need to live happier, longer, more comfortable and pain-free lives.

  19. # Rhiannon Thompson on 15 October 2012 at 16:07:

    I support this.

  20. # Charlotte Anwyl on 16 October 2012 at 5:51:

    After watching my 19 year old cousin pass away from CF and then her twin sister being diagnosed 6 months afterwards, I am so desperate for something to be done help improve the quality of care of patients with CF. Please, please give this illness the support it needs.

  21. # Gill Roberts on 16 October 2012 at 16:45:

    I am a retired dietitian and looked after many children with CF during my working career. They were all told that there might be a cure one day. They all live in hope. With this drug there would be hope for at least a few of them.

  22. # Kass on 24 October 2012 at 8:28:

    My 15 month old son has CF, Delta F508, he's spent his whole life in and out of hospital. Everything possible should be done, regardless of the cost

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  25. # Tanya Kane on 27 November 2012 at 22:05:

    I have CF,Delta F508.Im 18 years old and have spent my life taking medication doing phsio etc, going into hospital plus numerous hospital appointments.I live in hope for a cure one day.With this new drug[kalydeco] there would be hope for some CF sufferers.Everything possible should be done,regardless of the cost for all CF sufferers,the lives that could be saved and have a better quality of life.

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