Dear Prime Minister Trudeau:
My name is Melissa Verleg and I am a 36 year old mother of two young boys from Vernon. I live with cystic fibrosis (CF) and am writing to urge you to implement a strategy to improve access to medicines for rare diseases now. Canadians with fatal diseases like CF have waited long enough. We see people with CF in other countries getting medicines they need while we suffer and die. Your government needs to do better; all Canadian governments need to do better. You can’t just sit and wait and do nothing: people’s lives are on the line.
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults; approximately 4300 Canadians have CF. CF causes various effects on the body, but mainly affects the digestive system and lungs. The persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.
In 2017, the median age of survival for Canadians with CF was 52.9 years; this is the age beyond which 50% of babies with CF born today to live. Thanks to medical interventions and new medicines this is a significant increase from the early 1970s, when many children with CF did not make it past four years of age. Still, of those with CF who did die in 2017 the median age of death was 33.6 years. Canada needs to do better.
Right now there is no cure, but for the first time in the history of the disease there are new medicines that treat the disease itself and not just its symptoms. For a while, I had access to one of these medicines – Orkambi – through private insurance. This medicine was working great for me: it changed my life! My health was stable, I could breathe better and had a lung function of 69%. I also gained weight, which is important because people with CF who have nutritional problems due to mucus interfering with digestion which leads to malnutrition and poor growth. Orkambi changed this for me.
I was on Orkambi for about a year when I found out I was going to lose my private health coverage. Knowing that I was about to lose coverage, my healthcare team and I made an appeal for coverage to my provincial Health Minister Adrian Dix, but my appeal was declined because Minister Dix said that Orkambi had received a negative recommendation from the Canadian Agency for Drugs and Technologies in Health (CADTH), which makes non-binding recommendations on which prescription drugs our public drug programs should and shouldn’t cover. The ministry repeatedly dismissed my appeals and I eventually lost access to a medicine that I now know was saving my life.
How do I know that? Because since I lost coverage my health has rapidly declined. I have been hospitalized since September 16 and my lung function has dropped from 44% when I entered hospital to 18% lung function at present. I am on oxygen full-time and am active on the lung transplant list. At this point, that is what I need to live.
While I am willing that a transplant comes soon, I also have to resign myself to the fact that it may not come at all. For a while, we didn’t think I was going to make it and the lung transplant isn’t a sure thing. Do you know how hard it is to sit down with your spouse and young children to tell them that mommy may not be coming home because she can’t get the medicine she needs, especially when she used to have the medicine she needs and was so well? My heart breaks just thinking about that conversation.
What is most tragic about my case is that I may leave my husband and boys behind because I could not access a medicine that was highly effective for me in a country that claims to have universal healthcare. Canadians now have the right to die, but what about my right to live? Section 7 of the Charter and Freedoms guarantees every Canadian the right to life, liberty and security of the person, but I don’t feel very secure in my life, let alone my liberty, right now.
Sadly, I have had to launch a Charter challenge to try to access the medicine I need. It is what I have had to legally do. But I can’t wait that long. It may take years to get to trial and the window through which I may still be able to respond well to Orkambi is closing. There is another drug that could potentially help me – Trikafta – but it is not available in Canada yet. I might be able to get it through a special program of Health Canada, but my healthcare team tells me that I would need to fail on Orkambi first. As I mentioned, my lung function is now at 18%: I really can’t afford to fail anymore. It feels like my country is playing a deadly game with my life.
Prime Minister Trudeau, I want to live to see my boys grow. I want to grow old with my husband. I want to have the things that the majority of Canadians take for granted, but not me. No, I cherish every moment of every day, knowing that they could be my last. I am having a very hard time coping with all of this right now, but I also need to know that this will never happen to any other Canadian. I need you to promise me that and I need you to act now.
Many countries have strategies that help people with rare diseases get the medicine they need, but not Canada. That is why the CF community was so hopeful when your previous government committed to creating a rare disease strategy in the 2019 federal budget, but then our hearts sank when we found out it wasn’t going to happen until 2023/24. We can’t wait, Prime Minister Trudeau. We are sick and we are dying and we need you now.
Canada has been working to try to develop a rare disease strategy for over 15 years. Health Canada proposed an Orphan Drug Regulatory Framework in 2012, but it was not enacted. Then, in October 2017, your government deleted all references to the framework from Health Canada’s website, without notice or consultation. The rare disease community was distraught when this happened, and you dealt a devastating blow when your last budget said we had to wait another four years to replace what we thought we already had.
CF is a progressive and fatal disease. People with CF can’t wait. I can’t wait. Medicines that can control the disease for some – like me – are here now and there are 40 more promising therapies in the pipeline. Right now Trikafta can treat 90% of the CF population and soon there will be medicines that could treat up to 95% of the CF population. If we don’t get access now, we are going to miss a window of opportunity to turn some people’s lives around, and we will lose people we may have been able to save, all in the name of a four year implementation window. That window is closing too quickly on too many of us.
Prime Minister Trudeau, you could change all of this. You could change the lives of – and save the lives of – so many Canadians with CF and other rare diseases if you act now and implement a rare disease strategy. Our future depends on it.
I will follow up with your office shortly to arrange for a conversation. Our lives are in your hands.
Melissa Verleg, mother of two, Vernon, British Columbia
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