Blog Katie Allen July 2023

This month’s blog is a bit more stream-of-consciousness than usual and I apologize, but it felt like something I needed to say and this was an appropriate place to work through some emotions. Likewise, this month’s picture is of a favourite walk of mine that I go to clear my head.

I found out today my knee brace is going to be partially covered. I was so excited I started to tear up. My doctors have been recommending I wear a custom knee brace for over 10 years now, but as a student, the cost was simply out of my reach, especially with student health plans that rarely covered complex and/or expensive needs. So, after 2 knee surgeries and the serious conversation about staving off knee replacement, I knew the time had come for a brace. However, after confirming my extended medical covered braces to some degree and meeting with the fitter, I submitted my estimate; fully expecting an outright denial of the $1600+ cost. In the middle of the night, my phone binged and an email said to log in and read the estimate letter, where I saw the shocking news that 60% would be covered by my plan… I could actually afford to do this. As mentioned before, I nearly cried with excitement.

Then came the realization, I am crying in joy over having the necessary medical care provided to me and I will still have to pay 100s out of my pocket. Don’t get me wrong, I am still thrilled and super thankful, but how sad is it, that this is the major success? That, in my medical system, for a person with a rare disease, getting some care you have needed for years, for only a few hundred dollars, brings you to tears of joy. Overall, I am very much left with mixed emotions. On one hand, I am still super happy and excited to be getting my brace and that my insurer is helping me. On the other, I am reminded that the only reason I am happy is that receiving expensive, timely non-hospital/emergency care as a rare disease patient is still so hard. I can only hope one day someone in my position only feels the joy of getting the care they need and not the surprise that it will happen.