Orkambi – Access to Medicine



so being the parent of a 14 year old is really no different than that of a parent of a child with cystic fibrosis except for the fact that you carry that weight around with you all the time CF the progressive illness and that means over time people have more and more difficulty with basic functions so for example in the lungs the damage that happens as a result of cycles of infection and scarring means that people have a cough every day and they cough up phlegm every day and they may be short of breath doing activities initially sports and physical activities but eventually they become short of breath just doing everyday things like you know making their bed or walking up the stairs everything we do revolves around ensuring that Lauren stays healthy and that she has an opportunity for a great life so we know that in people with cystic fibrosis measuring their lung function with a breathing test provides us with a number that actually is predictive of how long they'll live we also know that the number of chest infections that people of person has over the San Jose a year impacts their overall survival now we're into this new era where we actually have therapies that treat the basic deeper one such example of a medication like this is loumac after ivacaftor instead of sort of fixing the damage after it's already happened we're in this sort of time of fixing the illness before before it occurs or candy has affected my day-to-day activities by making me healthier before I was honor can be I got sick like at least three to four times a year now I rarely get taken a maybe once or twice we've seen a meaningful increase in her lung function which is always something that parents of children with cystic fibrosis are concerned about and I think in Laurens case we feel very strongly that or can be has given us the opportunity to arrest any further lung degradation at this stage where kids are often in their teenage years starting to decline once that happens once you lose lung function it's very difficult to get it back and so we're very hopeful that being on our candy is helping lauren to stay healthier long it's been very easy for me to keep up with my friends and i would say or being on our candy has definitely been free and in Laurens case being on the drug or cambie has had a meaningful difference in the way that that her life is and I think it would be very unfortunate if decision makers at the provincial and federal level we're not to fund or can be for anyone who can benefit from this drug or any other drugs that may be in the near-term pipeline so it makes a big difference having having Lauren on our can be and and being as healthy as she is has been really wonderful for our family it's given us the opportunity probably to do things and to plan for the future in a different way then probably parents have in the past and so you know setting up for you know what we're going to do a Christmas break this coming year is something you know pretty well off into the future and I think it's often difficult when you have a child with an illness like this to plan for it so r can be has really allowed us to with confidence look to the future I find through a comedy that it is a step forward and it's helping kids like me have the hope that CF soon will be non-existent you

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