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Volunteer Advocate
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Sandy Stevens: I needed answers and the answer was advocacy

My 12-year-old daughter who has Cystic Fibrosis (CF) has been in the hospital many times with longer stays each time. They’re trying all the support and treatments they can offer but one treatment that has never been used is a disease modifying drug called Orkambi.

  • She has the specific CF Gene mutation to take this medication
  • She is eligible for this medication as approved by Health Canada for her age group.
  • Her CF team has tried to get the drug for her as it is available and approved in Canada, but she has been denied access.

I am seeing my daughter deteriorate physically and mentally before my eyes and it angers me that she can’t get access to a medication that may make the difference in her quality of life but because we don’t have the right medical insurance plan and we do not qualify for Orkambi unless my daughter becomes even more ill, having a 20% or greater relative decrease in FEV1, we don’t get it.

I want to know why?  I needed answers.

I have been fundraising numerous ways for CF Canada and I know that makes a big difference but if my daughter and the many others denied access cannot receive a medication that may slow the progression of this devastating disease, then fundraising is not enough.

I can’t raise enough funds to maintain a medication like Orkambi, but our provincial governments can listen and make the right changes that can support the whole community.

So advocacy felt right.

To advocate is to use the right words at the right time to as many people who want to listen.  For me it is about telling what living with such a complicated rare disease is, so more people can understand and accept. I advocate to get answers from the government, and drug companies so the experts in CF can use their knowledge to make many positive changes.

Advocacy provides me the opportunity to speak and state the correct information.  I can share my daughters’ journey to elected officials, the good and the bad, and what CF Canada is doing to support us and all the other thousands of Canadians living with CF.

I do this in a variety of ways through writing letters to politicians, speaking at events and arranging meetings with our local MLA to tell our story and advocate for change.

CF Canada has an amazing national advocacy program that supports all advocates right across Canada, you are never left to do the work or research on your own.  They are the experts and they inspired me to become a regional advocate. I am excited to see the changes advocacy makes for the CF community.

Just as I was writing this I received an update stating that Saskatchewan, Alberta and Ontario establish criteria to prescribe Orkambi on a case by case basis. This a great step forward and this is because of our advocacy work.

If you feel you need answers, want to make a difference and show your support; consider supporting advocacy in your province. Every little bit counts and the more we advocate the better chance change can happen.  You don’t need any experience for you will be taught and informed. You just need sign up. Please be part of our team that fights for change.

Support the fight for a cure!

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