Tuesday, May 16, 2017

Diabetes Blog Week 2017 Day 2: The Cost of a Chronic Illness


Diabetes has an opportunity cost.

When I picked up my US Social Security card in 2003, at the start of my undergrad, in the same government office with me was a man who was arguing with a woman behind the counter. I didn’t get all of it, but I did get that he couldn’t afford his insulin, and that he was very upset, even crying. I wish I had spoken up then, but I was 18, didn’t want anyone to know I had diabetes, and was with my parents. I felt helpless watching him.

I am a dual citizen of Canada and the United States. I grew up in Toronto but did seven years of higher education at Princeton and Columbia. Many of my best contacts are in the States. My husband is from the States (though he is now a dual citizen). I enjoyed many of the conveniences of the States, but once I was through with higher education (and its associated health plan), I felt I only really had one choice: I was going to move back to Canada. Now, diabetes is not the only reason I moved home. I love my home city. I have a huge network of friends, and I am very close to my immediate family.

But the basic fact is, in 2010, with health care costly and nowhere near assured in the US, I was too scared to stay. I am lucky I had the option to go. If Canada has an opportunity brain drain, the US has a healthcare brain drain, because I took my two fancy US Ivy League degrees, and I fled.

Diabetes has a monetary cost.

When the ACA passed, I was in Canada, but I was following its progress closely. I turned to my husband with tears running down my face because, for a brief moment, I felt like the country had decided I was worthy of life. I said, "we might be able to live in America again someday!" By we, I meant me and my husband specifically, but also “we” in a general sense: we might all be able to live in that idealized nation that believes everyone has a right to life and freedom and happiness. 

I don’t think that’s coming any time soon now.

In Canada, things are not perfect. Medication is not covered, and can be expensive. My work contract keeps changing, which means sometimes I have prescription insurance and sometimes I don’t. The prices are still lower. My husband has insurance, which means that it doesn’t matter anymore - as long as he stays with his employer. However, my doctors’ visits, multiple specialists, surgeries: they haven’t cost me a thing. If I have to go in three times a week for a one-minute treatment for a diabetes-related autoimmune skin condition? That’s free, instead of the thousand bucks per visit they tried to charge in the US (thank goodness for Columbia University’s health plan). 

In Ontario, the current government is working on a Pharmacare plan, and I hope they wind up with something good. Why?

Diabetes has a physical cost.

It’s not right that, even in Canada, I could get an injection of insulin in a hospital for free, but it costs me to take some home so I can live and NOT end up in the hospital. It’s not right that the government is currently paying for all the plastic parts of my pump supplies, but won’t pay for the insulin inside which is actually the only part of the contraption that I need to stay alive. It’s not right that these things can lead to a person, even in Canada, rationing insulin, and that preventive steps aren’t covered the same way as landing in emergency is, because covering the former helps to prevent the latter. It helps prevent these physical costs. It can’t prevent all of them, but overall, reducing the monetary cost helps to reduce the physical cost.

Diabetes has an emotional cost.

It’s exhausting to have to consistently advocate for your right to exist as a human being and not go into debt and not have a subsistence-based existence where you choose between things like eating and being able to metabolize what you eat, living in an apartment or living an actual life, simply because you do not produce a hormone. 

This is not currently my situation, nor is it likely to be. I come from a position of relative comfort and privilege. I was in that Social Security office fourteen years ago, not to beg for the ability to afford my insulin and not die, but to get my documentation so that I could go to my Ivy League college. 

I felt for that man, and I will never forget him. I wonder if he is still alive. 

I wish I could do more. I know I don’t do enough. I read the horror stories. I donate money. I sign the petitions. I call the reps. 

But it feels so unfair that a group of people who are dealing with opportunity, monetary, and physical costs also have the emotional cost of convincing other, more privileged people, who can do something to reduce these costs, that they deserve life.

In the words of playwright Tony Kushner, we all deserve “More Life.” 

Me. You. The man in the Social Security office. The woman asking for change on the street. The throngs asking for change in a country’s ethos.

More life, and less cost.

Prompt: The Cost of a Chronic Illness - Tuesday 5/16
Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

9 comments:

  1. I really like that you took the prompt of cost and considered it in a big picture sense. You're absolutely right. This is the first post I've read from Canada so it's very interesting to see how all of these systems work, being from Australia myself.

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  2. I love your perspective having been in both the US and Canada. I love the line more life, less cost. Thanks for sharing :)

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  3. your portrait of the man at the counter fighting for his supplies is heartbreaking..."I wish I could do more. I know I don’t do enough. I read the horror stories. I donate money. I sign the petitions. I call the reps. " its all we can do!!! Thank you so much for sharing

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  4. I feel for the man you encountered. We need to continue to advocate in Canada for those who can it afford the diabetes related things they need!

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  5. I'm fascinated by the differences in health care in different countries. But the bottom line is, I have yet to stumble across a perfect one.

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  6. What a heartbreaking thing to witness... and absolutely agree with this: "It’s exhausting to have to consistently advocate for your right to exist as a human being"

    Thank you so much for sharing, and nice to meet you! Looking forward to reading more :)

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  7. thank you so much for sharing these stories with beautiful words, look forward to connecting more

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  8. I knew I could trust you to include a quote from a playwright. This was really well written. Sorry I haven't been around your blog much lately. I'm glad to be catching up now.

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