In a few weeks it will mark 1 year since my CXL surgery. Looking back at my journey I am so grateful for all the people who helped support me in every way possible. I stood up for myself and all the other people across Ontario who also suffer with keratoconus. I stood up for the injustice in our broken health system that has spent millions of dollars into research that has proven CXL to halt the progression of keratoconus with a report released in December 2016. A research project that continues to be funded by the government instead of moving forward with covering CXL treatment through OHIP. A procedure that is already covered by provincial healthcare in many provinces across the country while we Ontarians and others are still fighting for coverage.
Today at my optometric clinic we received a phone call from the Ottawa Eye Institute that funding for CXL has been frozen by the government with no indication at this time of future funding. I contacted Kensington Eye Institute as they are the head of the research program. They informed us that funding was frozen for CXL but Kensington has since regained funding. Anyone who had surgeries cancelled have since been contacted and rescheduled. Anyone who is diagnosed with keratoconus must have a referral sent to Kensington. They will have an exam done with one of their doctors, and if they are deemed a candidate they will be put on the waitlist for CXL There are still so many questions that I hope get answers to in the near future.
We now have patients who were in the process of being referred for CXL who are being told their procedure will no longer be covered under OHIP. My heart sank, my stomach dropped and I instantly thought “Wow, I can’t believe all the progress we made has just been wiped out!” I felt like the rug I was standing on was ripped from beneath my feet. Thoughts started racing, and I felt ‘lucky’ that my diagnosis was a year ago while there was funding available. My thoughts then deepened, and I realized that just because my journey was successful, doesn’t mean the fight is over. The fight just got harder for thousands of people across the province who were on the waitlist for CXL surgeries, for the people who are newly diagnosed and still trying to figure out what options they have, for the people who are struggling with their vision and have yet to be diagnosed. This is bigger than me, and I feel the responsibility to continue to fight for those that need a voice.
It's time to speak up once again! I will not stop fighting until we make this change happen. Please help me share this update and sign my petition. I will go to Queen's Park if I have to and challenge our government to make the change that should have been done years ago.
For anyone who can help or has questions please send an email to: michiekb@hotmail.com
Many thanks again to everyone who has supported me over the past year and continue to support CXL funding.