For most people, a cough is a temporary inconvenience. For me, and the thousands of other Canadians living with cystic fibrosis (CF), a cough is a reminder that we are living with a rare disease that there is no cure for. There are medications and treatments that can help us feel better for longer – but unfortunately, drug access is not the same for every person living with CF across Canada. We are all treated differently. It is one the reasons why I have had many uncomfortable moments at the hospital when it came to me getting access to medications that meant the difference between life and death.
Living with CF has an impact on all aspects of my life, without me being able to do anything. As a mother all I want to do is to be there for my daughter, who is three years old and is still too young to fully understand why mom is so tired or sick all the time. My daughter will say things like; “My mother is sick”, or “I’m going to heal my mom”. When I cough, she rushes over to me and asks; “How’s Mommy?” then she pretends she’s listening to my lungs. Some days I have energy, I’m feeling good, and we can play together. Other days I cough a lot, I can’t sleep through the night, and it affects my mood. We try to make the most of our situation; we make our visits to the hospital as fun as we can, since we spend so much time there. We do our best to find bright moments amid the darker ones.
My brother is also living with CF. Even though we live just an hour drive apart, we’re not able to see each other as often as I would like for many reasons; we’re often tired because of our health condition. Moreover, because we both have CF we need to be careful when we see each other. If we don’t take precautions, he can infect me with bacteria, or I can infect him. It is a dangerous situation for both of us. That’s one of the other challenges CF patients face –we cannot get close to each other, even though it would be nice to be around someone who knows exactly what we are going through. It’s just too unsafe.
Our healthcare system is broken. Most people don’t realize this – but when you are sick, when you need access to specific medications that might not be common, you realize very quickly how unequal it is. Getting access to medication that has had such a tremendous impact on my health was not an easy process. In my case, no one had told me about Orkambi, a medication able to treat my CF. After researching about this one; I needed to ask my doctor for him to prescribe it to me. I had to ask several times, citing several different reasons. I had to explain that I just wanted to stay alive. Then there were many stages of paperwork, phone calls to check on the status of my request, meetings at the hospital. I needed to do all of this while being sick, while taking care of my family and my health. My brother also had to fight to get access to medication. People with CF often need to advocate for themselves so they get the care they need, otherwise, they will die waiting. We don’t have time to wait for the health system to fix itself, we need to get involved.
I had to do whatever it takes – but not everyone has the energy for this fight. What happens to those patients? Who will speak up for them? I can tell you it’s difficult when you’re alone in the hospital and thinking about that. At night, you go to bed and you tell yourself that your life depends on a bureaucratic decision because you need a medicine that is expensive. Your family, your friends, they are with you and they’re sorry to see your health decline. They feel helpless. Everyone is worried, but ultimately it all comes down to a person in an office who will make a decision about whether you live or die.
People with rare diseases, like cystic fibrosis, are treated differently in terms of healthcare access – and it’s cruel. It’s something that we should all feel outraged about.
We are not helpless. It is not hopeless. If all Canadians came together, if we spoke up and told our elected officials that we need to close the gaps in the healthcare system, that we need a national rare diseases strategy – that is a powerful thing. Together we might be able to save thousands of lives.
Like Roxam, act now and help get all people living with cystic fibrosis the medicine that can change their lives.Sign the petition now