Rare disease protocols need to change

A story was just brought to me, and although it’s not about pheochromocytoma … it hits home

A young girl in Canada is fighting for her life with cystic fibrosis, she’s in the end stages of this awful disease.

But wait, imagine you being at the end of your life, and KNOWING there’s potentially a cure for your illness, but not being able to have access to it.

US has approved this new miracle drug for cystic fibrosis patients, and many of them are reaping the reward. While Canadian patients are just clinging onto the hope that this drug will eventually be applied for! Not even accepted, just applied for.

What kind of rare disease protocols do we have when there are 17 year olds dying because the US has access to a drug that Canada doesn’t? Absolutely none? I don’t know of any, correct me if I’m wrong. I don’t think this would be happening if there was something in place, we shouldn’t have to beg and campaign and advocate for our lives, our lives should just matter enough to get access to things that will help us. Even if it only helps in the most minor way to improve quality of life, it shouldn’t be questioned.

That’s not what this drug is doing, this drug is claiming to provide miracles for these patients.

I know from experience, right now I’m sitting in a hospital bed hooked up to oxygen doing breathing treatments every 2 hours, and this will be temporary for me. Thank god. I don’t know what I would do if I didn’t have my full lung function on top of all the other crippling symptoms of my disease.

I don’t know what I would do if I knew there was a cure for my illness and it just wasn’t available TO ME.

We need to spread awareness for these people, people like us. Who are rare, but there! They need to be heard. Faces need to be seen, stories read, they are PEOPLE. Not a number on a clinical trial, not a lung function, they’re people like you and me.

Please share this post, and hopefully we can make a difference in making some noise about this drug and the overall protocol for accepting new drugs into Canada 🇨🇦

Here is the link to the story I was forwarded: please pray for Chantelle

Pheo VS Fabulous ❤️🇨🇦✌🏼