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Trikafta saved my life - But I have 'survivor's guilt' because others don't have the same chance

Updated: May 13

My name is Stephanie Stavros and I am a 37-year-old patient living with cystic fibrosis (CF).


Without Trikafta, 2020 would have looked very different. I would either have been recovering from a double lung transplant (if lucky) or my five-year-old son Grey and my husband Jim, would have been grieving my death.



In 2019, I was in end-stage lung disease and my digestive system was failing me. I had lost everything. I lost my career, my independence and my ability to be an active parent. I was tethered to an oxygen tank and an IV pole. My body was worn down from the steroids and ICU grade antibiotics running through my small body, 10 hours a day. My intestines developed c-diff, my bone density decreased, and my energy was depleted. Walking became unsteady and at times not possible. Simple tasks like bathing and communicating became difficult.


I was being evaluated for a double lung transplant and pain management became a critical part of my health regime. My lungs were scarred, my ribs cracked easily, and lung bleeds increased. One evening, a large bleed landed me in the ICU. My family feared the worst.

When Trikafta was approved in the US, I was shocked that it wasn’t on its way to Canada. I didn’t have time to wait. With every bit of energy that I had left, I used my voice to FIGHT for access.

There was no compassionate care program open at that time in Canada but I fought hard to push those limits. I went very public with my story. I used my social media to do letter writing campaigns and petitions. I begged both the Canadian government and Vertex Pharmaceuticals, the manufacturer of Trikafta to save my life. I created videos and finally caught the attention of the media. I went on national news and begged for my life to be saved. I never gave up.


Eventually, Vertex Pharmaceuticals granted me compassionate access for Trikafta. I was the first Canadian to receive this gift. On Jan 23rd, 2020, my life was saved when I took my first dose of Trikafta.

Click to read/watch Global News video as Stephanie became the first person in Canada to gain compassionate access to Trikata.

I was asked by my care team to make goals for my Trikafta journey. My goals were to independently bathe myself, laugh without a coughing fit and dance with my son.

Within hours of taking it, my body began to transform.


Within 10 days, I reached each goal with ease and more. Within seven days, I gained back years of lost lung function. Within six months I gained back a decade of lost lung function. My lung function went from 28% to 45%. For 36 years, my body was malnourished. I didn’t have fat on my body to protect and nourish me. Within three months on Trikafta, I gained 30 pounds. For the first time as an adult, I have normal liver levels. My sense of smell and taste returned, and brightness came back to my skin tone.


The most unbelievable part is, my diagnostic test for CF, the sweat test, is now NEGATIVE.


I find myself for the first time in my adult life, taking deep, full breaths. My body has relaxed and is no longer in a war with itself and I can finally get a full night’s sleep. At home, I used to go to bed with tears streaming down my face, worried that I wouldn’t wake up in the morning. I would position my lungs in a way that I could find a stream of air amongst the thick fluid while I slept. I would pray that my shallow source of air wouldn’t fail me while I slept. Many times, my limited lung capacity would fill with large volumes of blood and we would have to rush to the hospital in the middle of the night.

While in the hospital, falling asleep would cause alarm bells to sound as my oxygen dropped and my heart rate spiked. I had my best friend sleep next to me and hold me while I endured panic attacks and searched for air. My husband would take shifts being by my side and when I drifted off to sleep, he would have to wake me up and yell “BREATHE Stephanie!” as alarm bells rang on all of the screens connected to me. My four-year-old son would visit me in the hospital and even talking to him would take more energy than I had. This was not a way to live.


Since I started taking Trikafta, it has allowed my husband to carry out a full day of work. It’s allowed my parents to relax after 37 years of being CF caregivers. These three simple pills a day brought me back to my son. I am now the present and active mother that I dreamed of being.


My chronic pain has disappeared, and I am stronger than I have been in more than a decade.



I’ve transformed from a 36-year-old that needed to be supported to use the washroom, to a 37-year-old that for the first time in life, has gone running.



Prior to being given compassionate access to Trikafta, my season of life was coming to an end. My doctor said to me during an appointment “Stephanie, women with cystic fibrosis in their mid-30’s don’t do well with the disease - and by don’t do well, I mean die.”


I started preparing paperwork. For the first time in my life I saw each person close to me cry out of fear. We were losing hope… until Trikafta changed it all. I am now VIBRANT. I am a new person. Even my skin colour changed from pale-grey to a pink, oxygen rich tone.

Click to watch YouTube video as Stephanie surprised her husband and family with her life-changing news about compassionate access to Trikafta

Since starting this medication, I have witnessed my family’s fearful tears transform into tears of joy and reprieve. They are witnessing my second chance at life and I am thriving. I’m writing this with 98% oxygenated blood while breathing room air. For a CF patient that was facing transplant, this still feels unreal. This has truly been a miracle for my health. I can only hope that all Canadians with CF can realize the power of this medicine and be able to feel the health benefits. I hope that everyone who can benefit from this drug, in every country in the world, will also have this chance.


This story should end here, at the happy ending. I would love to tell you that I go on and live carefree now that I have Trikafta but I don’t. I live each day knowing that I am one of the LUCKY ones. As grateful as I am to be alive, I now find myself struggling with survivor’s guilt. I take three small pills a day that have changed my life while others in Canada continue to suffer. This is the medicine that we have all been waiting for and it breaks my heart that we can’t all access it.


To know that in Canada, you have to be at end-stage of the disease to have a chance at accessing this medicine disgusts me. I compare it to needing to be at stage 4 cancer before gaining the right to be treated. Why should patients need to continue to suffer mental and physical trauma while others are gaining their lives back? It’s cruel and I expect more from my country. We lose 50-60 CF patients a year to this disease in Canada – at an average age of 30. As far as I’m concerned, my country is willingly letting that happen.


I hope that Canadians, as well as the global CF community can be united and make our voices heard. I won’t stop fighting and using my voice until we all have equal access.


Follow Stephanie on Instagram: @rosielifewithgrey

Follow Canadian campaigning group ‘CF Get Loud’ - Stephanie is the co-founder of the group

Facebook: https://www.facebook.com/groups/CFGetLoudCanada

Website: www.cfgetloud.ca


Articles about Stephanie's fight prior to compassionate access of Trikafta:

https://globalnews.ca/news/6305301/pickering-mother-cystic-fibrosis-miracle-drug-canada/

https://www.durhamregion.com/community-story/9763156-pickering-mom-fights-for-life-changing-cf-medicine-to-come-to-canada/


PETITION

Call on the government to provide Canadians with access to life changing drugs.


Join the fight for global access to cystic fibrosis drugs - Click here



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