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.
The 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.