I wrote this note on my phone ages ago. I just came across it and think it may be even more relevant now.
Many will have seen the brave people in the CF community who have shared their experiences of having to reduce their dosage of, or entirely come off, Kaftrio due to some significant (and scary) negative side effects. Whilst the majority seem to get on well with the drug, there is a very important minority whose voices we must listen to when they tell us the mental health challenges they have faced when taking the drug. We must make sure they are heard by the charities and drug sponsors who do such incredible work to make these drugs available in the first place.
But it shouldn’t be a surprise - it certainly isn’t to me! These modulator therapies are brand new in drug terms. 5 years ago Orkambi and Kaftrio were not being taken by the majority of the UK population with CF. And in regards to all the modulators available, we still have so, SO much to learn.
I have had some conversations where fellow CF mamas have kind of diminished my concerns as a CF mama because Arlo is eligible for modulators. It has been insinuated that I shouldn’t be worried, I needn’t fear for his future, I am not justified in feeling some of the things I do because his future is ‘guaranteed’. I have heard the same from people outside the CF community “oh Arlo will be fine cause, you know, Kaftrio is great”.
There have also been comments from those within the community that I don’t care ‘as much’ or ‘enough’ (I am never sure quite what they mean) because Arlo is eligible for modulators. Like my fight for the CF community is done now we have Kaftrio and I am just gonna say ‘get f***ed’ to those in the 10%.
Well I never felt that way. Until Alro is taking a drug and I see it work for him, I won’t take anything for granted.
And most importantly, even if we are lucky enough to have that day where I feel like his future is a little less unpredictable and scary, I certainly won’t be stopping until we see 100% of the community being offered the chance for a life truly unlimited. In the UK and beyond!!! 💛💛💛💪💪💪
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