October 22, 2019 at 12:04 pm #13856Luisa PalazolaKeymaster
Yesterday I got a screenshot of the FDA’s approval for what is now Trikafta: I’ve been on the study for the last 10 months — and hearing an actual name (aside from triple combo) is bonkers to me. What’s even more bonkers is how I feel: how my numbers have changed, and the ability to wake up and breathe without a slew of mucus constricting my airways. I am so full of elation and excitement (and a little confused) about my future and my life. This excitement spills over to all the children with CF who will be able to benefit from this drug, and never suffer the horrors that CF has caused me. And, of course I am thrilled to know that so many people are going to have a massive health changes, like me. However it’s a muddied victory, and it feels weird:
This medication is expected to serve 90% of the CF population in the US. Which a sweet victory, but as I was telling one of my best friends, Tre LaRosa: we as the CF community are so tight knitted, a lot of us feel a little wary to celebrate so loudly (and I believe we should) because there are people who aren’t going to benefit.
The other ten percent: 90% still leaves a pretty good portion of people who still don’t have a novel therapy that could revolutionize their world. One of my incredibly good friends, Miriam, is one of those people. We’ve had back and forth dialogue about this, and how muddied waters it feels… excitement for the community, but isolation as of now for not having a therapy. She even is having her cells tested in a lab to see if the respond in any to way to Trikafta.
The guilt: Another confusing aspect is knowing that we have friends and family who have passed because of CF. Who, never were given the opportunity to even try any of the modulators. I know feeling guilty is futile, and that my friends who have passed wouldn’t ever want me to feel this way — but, instead would want me to celebrate this victory to cherish this gift of life. But, it’s important for me to remember them in going forward with my NEW health, I feel it’s important to honor them in every way.
The cost And then, there are people who are eligible — but, by circumstances of birth, they were born in the wrong country. The cost of this medication is unbelievable and nearly inaccessible, which is something that a lot of us feel uncomfortable towards, but are repeatedly told we should be grateful for even having a medication, period. This is true. But, I think it’s wrong to out-price a human to live and breathe easily. Right now, even in countries with phenomenal health care systems (i.e in western Europe) patients aren’t going to get this medicine. And, then we start thinking about patients who almost don’t have a chance — like in latin america — where basic enzymes and antibiotics are not easily accessible. How do they get this medication? How can EVERYONE breathe easily?
And, then — there are people who are eligible and are in the US. Who just don’t respond well to CFTR modulators, and may not see enormous benefit.
It’s a lot of mixed emotions, all that I have been working through since the start of taking Trikafta 10 months ago. And, like mom has said “This is your gift, appreciate it. Because things come and go.” I think guilt is a normal feeling to arise, but it’s not conducive. What’s conducive is to have a therapy that helps me breathe, and gives me energy to empower and help other people with CF who aren’t as fortunate — yet. Because, I genuinely believe this is just the beginning 🙂
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