Many of us can relate to the daily stress and worry that comes with being a parent; scheduling play dates, juggling appointments, daily chores, making sure our children are happy and healthy. For parents with rare diseases, we need to manage those same chores alongside our health challenges.
When women become mothers, there’s a natural desire to put your own needs aside in order to tend to your child. When you have cystic fibrosis (CF) however, sometimes that’s just not possible. Have you ever had to say no to your child when they want to spend time with you? Or when they ask to hear you read just one more story? I’ve had to say no more than I would like because of my illness. One of my son Charlie’s very first sentences was; “All done physio, Mom”. He was insisting that I be done my physio so that I could play with him. It was heartbreaking to hear.
Having to put my disease ahead of my son has been hard not just on my son and myself, but on my whole family. That’s my reality, living with a rare disease. If I don’t put my own health first, there is a very real chance that I won’t be around for my son, which is something I can’t bear to think about.
Living in Canada and having access to medical care is a privilege. I’m grateful for the medications I’ve been able to access so far, and the incredible care I receive from my specialized CF team. But in my experience, people with rare diseases are treated differently in terms of healthcare access. The drug system in Canada is broken, and Canadians with rare diseases like cystic fibrosis are often unable to access the medications they need. Still, we will do whatever it takes to take care of our health.
Canada is one of the few developed countries without a rare disease strategy, which guides decisions about access to drugs for rare diseases. Access to new medications seems to depend on what rare disease you have, which to me, is unethical. Most Canadians are not aware of the stages involved with approving new medications, and that it is not an equitable or transparent process. There are huge inconsistencies and differences from province to province, as well as a lack of patient input, which can be very frustrating.
Doing ‘whatever it takes’ for me means meeting with elected and non-elected officials to ensure they listen and hear my story, so people become more aware of what living with CF is like and the challenges we face getting access to treatments we need to live.
People should understand that they are not powerless – together, we can improve access to life-saving medications and treatments for all Canadians. Canada can fix its broken system by creating a drug review process to fairly assess drugs for rare diseases. The federal election is an opportunity for political leaders to make this a priority – to show us that they believe the lives of all Canadians, including people living with rare diseases like me, matter.
Learning how to talk to Charlie about my health in a way that is not scary and that doesn’t create resentment has been tricky. He’s at the age where he’s just starting to ask what my medications are, what my equipment is, or why I have to leave to go to the hospital. It’s challenging to say the least, and I have yet to find the happy medium between teaching him about the realities of CF, while avoiding a sense of worry.
I want Charlie to experience being a kid without being burdened by his Mom’s disease. I want to be a mom for as long as I can, and I want to watch him grow up. People like me have been, and will continue to do, whatever it takes to be around for as long as possible. The fact is that people with rare diseases, like cystic fibrosis, don’t have time to wait – the current system needs to change, and we need Canadians to come together to help make that happen.
Let’s do whatever it takes to help get Kim and all people living with cystic fibrosis the medicine that can change their lives.Sign the petition now