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Today I would like to discuss a topic I have very little personal knowledge of—struggles with health insurance. My personal experience is limited to dealing with short- and long-term disability advisors. This happened within the first year of my diagnosis of medullary thyroid carcinoma (MTC)

Ever since then, I have not had to deal with insurance issues at all. Deep breath.

Even back then, the most frustrating part I ever had to deal with was being pushed to go back to work after 17 months off, even though I wasn’t feeling 100% ready yet. However, it actually ended up being a good thing for me to be pushed on this matter. Although, it did give me quite a bit of anxiety at the time. 

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Now, these examples are nothing when compared to what some other MTC patients have to go through. 

I had the pleasure recently to talk to Amy. She was diagnosed with MTC not even a month ago. 

Amy and her family moved back to the US from Ecuador in 2020 after living there for a few years. In our conversation, Amy shared with me that she has been feeling unwell for a very long time, approaching 15 years. When the family moved back, she started aggressively pursuing answers to explain what ailed her. 

Read about HCP resources for MTC

When she moved back to the US, the family did not have insurance through an employer. Therefore, they went on Medicaid. Amy found a primary care physician who was covered through Medicaid. This physician tried to send her to specialists, as well as get certain tests done. After jumping through all the hoops to get these approved, their insurance changed to an employer-funded one.

Changing insurances at this stage, meant Amy had to start all over again. A new insurance company meant a whole new network, which meant new doctors and new hoops. 

At the end of 2021, their insurance company changed again. At the beginning of 2022, Amy found a doctor who finally was able to help her reach the right diagnosis. As I was talking to Amy, she explained to me how even though she finally was able to get the correct tests and see the right doctors, she had to make many, many phone calls. 

Every time her doctor wanted to send her to a doctor, it would take multiple phone calls to the insurance company. It would also take days if not weeks to get the approval from the insurance company to see the specialist or get the necessary test. 

This may not be news to others living in the US. For me, however, the way insurance companies work there is mind-blowing. 

I live in Canada, where we have universal health care. This means that all necessary tests, scans, and doctor visits are completely covered. We also have extended benefits. These benefits can be purchased privately as well as through an employer plan. 

In Canada, there is no such thing as a deductible. Amy mentioned how her family spends about $500 a month on insurance premiums. On top of that, she has had to pay $3500 out of pocket before the insurance kicks in. 

Being diagnosed with something like MTC, one scan can easily cost much more than $3500. These numbers are only for the “essentials.” This does not include things like massage therapy, chiropractic, or physiotherapy. Sure, in Canada I have to pay a small percentage on top of my insurance premiums to engage these services. However, it is quite affordable. These services have been extremely helpful in my case to improve my quality of life. My yearly medical expensive never exceed $3000 out of pocket, including insurance premiums, for my entire family of 3. 

Now, why am I sharing all of this information with you? Amy made it clear to me that she does not blame any health care professionals for all the hoops and the financial strain she has had to endure. However, I believe it is important for health care professionals to understand just how much of a financial burden there is on patients and their families once someone is diagnosed with an illness.