When I was initially being diagnosed with systemic mastocytosis (SM), I felt so lucky to live in Canada, a place where I had free access to medical care. I never had to concern myself with costs or limit what I was willing to spend to find answers.
From the outside looking in, free healthcare sounds amazing, but when I detail my experiences to people, they realize that it is a nightmare.
Tallying up the cost of “free” care
In the three years since my diagnostic process began, I have undergone two bone marrow biopsies, two gastrointestinal scopes, three skin biopsies, two hospitalizations in the ICU, 17 scans, three ultrasounds and three additional stints in the ER that didn’t require overnight stays. This doesn’t even include my routine blood tests. While I did undergo some of these things privately in order to skip long waiting periods, with the contribution I get from my group insurance plan I felt as though the cost was fair.
There were, however, times when I felt much more like a transaction than a patient. I would feel rushed by some doctors, like taking time to see me was something they were doing in order to check an item off of a to-do list rather than to help me. Over the years, I’ve learned not to let this get to me. I now won’t leave the room until I’m certain I won’t carry regrets from not asking questions or clarifying something.
I can’t put the onus entirely on the doctors for this; they are working in a very broken system. But I did get to a point where I felt like I wasn’t getting enough, and that I couldn’t get what I desperately needed from the physicians I had at my disposal. That’s when I started sending applications to hospitals in other countries.
Searching for care abroad
I focused mainly on institutions in the U.S., since it is so much more accessible to me than other locations. I had to rule out some hospitals just based on the initial price quote that was sent, asking for several tens of thousands of dollars. Other centers were ruled out due to not having any specialization in mastocytosis.
Finally, after about a month of applications and research and phone calls, I secured an appointment at Brigham and Women’s in Boston. This was truly the perfect fit — Boston is an easy road trip from Montreal for my mom and I. I was scheduled for an appointment in Immunology. We arrived for the appointment a little early, concerned about getting lost trying to find our way within the hospital, but ended up having nothing to worry about: our contact in the International Patient Center greeted us and brought us to the right place.
We were the only two people in the waiting room and tried to keep busy until it was our turn. About 20 minutes before the scheduled appointment time, someone approached us and asked if we were waiting for an appointment with him, which we were. He was very apologetic, and assured us that he was just going to have a quick lunch and then would be ready. I almost laughed with disbelief — he was apologizing for not being able to take us in early, and during his lunch hour! I can’t recall a single time that I didn’t wait at least an extra half hour for an appointment at home.
Once we started the appointment, I was immediately at ease. He allowed me to explain why I was there, what pushed me to travel outside of my country for medical care, and what I was expecting to get out of this appointment. I had never been given the driver’s seat like that before. When he spoke, he used language that I could actually understand as a non-scientist. We went through my history together, talked about all the medications I had been taking prophylactically and he made suggestions for what I should pursue next upon my return home. I had been booked for an entire hour with him, and we used every minute of it. I left that appointment with more diagnostic clarity than all my other appointments combined.
Yes, this appointment came with a price tag: one that I had to prepay, and wouldn’t be able to afford with the frequency that I have appointments. But overall, I feel that my visit in Boston was far superior to those in Montreal. And it’s not to take anything away from the doctors here; it has everything to do with how broken the system is.
Factoring everything in, returning to Boston is something that I would and have considered. Truly the only thing stopping me is the cost — but if I ever find myself in a situation like I was in, where all I am doing is going in circles, I would pay it again.
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
