Last month, I had the opportunity to attend the Spring Canadian Organization for Rare Diseases (CORD) Conference online. This is always a great opportunity to catch up with other rare disease organizations from across Canada and to see how political and economic conditions are changing access to care for rare disease patients in all provinces. In a country the size of Canada, it is not easy to get together, so these opportunities for re-connection and shared learning are cherished. Like many CORD conferences, the general feeling was that Canada is still falling behind other countries in terms of care and access to medication.
However, there were some positive developments to be celebrated; the new drug strategy is now in place, and people are receiving medication and care through it. Of course, for many of us in the vascular malformation disease space, no easily accessible medication is covered in Canada under these schemes. Still, any movement in this rare disease care space is something worth celebrating.
These moments are when you realize that having a good team behind you really does make all the difference. I have been so fortunate to have doctors who were quick to identify other routes of financial assistance, such as research grants or governmental agreements, to receive care. This has allowed me to continue to receive care even as I left pediatrics and moved, even though CMTC is not on any of the national strategies.
Overall, it shows that despite there being some movement on a national level to improve care for rare disease patients, even if your specific disease is not considered, there are still ways to get elevated care, even as Canada may lag behind Europe and other regions. It still takes a lot of self-advocacy and persistence to fight for the care, and that can be tiring and demoralizing, but it is worth the fight, and when you have the opportunity to get together with others in your community to fuel you on it can make all the difference in the journey.