Friday, 21 December 2012

All I want for Christmas... world-wide universal health care!

Okay so generally I shy away from blogging about anything political, but this particular issue is one that comes up a lot in conversations, private message, tweets, and emails. I have also been giving this particular series a good deal of here goes...

Everyone wants to know how much my surgery and reconstruction will cost (even inquiring Canadian minds want to know). And my answer for all those who are curious is...drumroll please...while the surgery itself is likely very expensive it will cost me NOTHING! Except my boobs of course. And maybe the $5 not covered in my drug plan for the prescription painkillers I went home with. But from a monetary standpoint it will not be a personal financial blow.
I live is Canada and the glorious land of universal health care which means despite being a Darwinian Fail all my medical misadventures have been covered. And don't think that I don't thank that giant red maple leaf every chance I get! Because I regularly kiss this frozen Canadian soil for giving me my health and my life. Despite being from the neighbouring country to the North, we Canadians have been bombarded with coverage of America's ongoing medicare debate. And obviously as a Darwinian Fail who thanks her lucky stars for universal health care - these debates get me fired up. I genuinely struggle to understand why so many citizens would oppose it.

Cyborg Hearts are Pricey
The system in the United States seems very complicated to me, because of the conditions and loopholes involved in medical coverage. So I recognize that I know very little. And I understand that this is a complex problem. There is a lot of criticism and concern surrounding the implementation of a universal system, but despite all the "red tape" we some how make it work here and in many other countries. The point is not whether universal medicine is possible. It is! And exists as such for good reason. Because health care in Canada is public, its purpose is to maintain and develop the good health of Canadians. In the US, this doesn't necessarily seem to be the case. There seems to be a contradiction between the the well-being of people and the bottom line. Health care for health versus health care for profit.

But with all these questions regarding cost, and the with the increased publicity surrounding ObamaCare, I found myself wondering...really wondering...what I would cost?! Let's break it down shall we... (note: I got quotes from several different online resources and did my best to average the cost. I am also writing this as though I am one of the 52 million Americans who do not have health insurance).

1. Stress Test - $3800 each
This is a diagnostic method I used a lot. Its been 8 years since my original diagnosis, so this is a ballpark figure, but let's be conservative and say I had 6 of these. Remember I am not even diagnosed yet...
$22 800 
2. EKG - $1950 each
This is another diagnostic method I use all the time, and still use regularly to check in on how everything is going. I can pretty much guarantee I have had 2x this number, but let's just say during the last 8 years I have had 30.
$58 500
3. ICD (metronic) Device + Implantation Surgery 
$75 000 - $100 000 each
So if you have been following my story you know that I got my first ICD at 18 years old. That has since been replaced with an updated model 2 years ago. And in between those two implantation surgeries I had to have a lead (one of the sensing wires) replaced (average cost $12 000). These surgeries represent general maintenance along with a set of unforeseen circumstances. So if you lost track that is 4 surgeries in a 8 year time frame.These are the average stats I found for Metronic devices, which happens to be the type of device I have now. They say their devices alone average anywhere between $15 000-$50 000 depending on the model.
$287 000
4. Bilateral Mastectomy + Reconstruction
So this particular stat was hard to come by. Mostly because there was not a lot of information out there about the cost of doing this surgery as a preventative measure, which is obviously why I am choosing to take this step. "Angela" who had a bilateral mastectomy (no reconstruction) at Northwestern Hospital, Chicago after a positive cancer diagnosis sent me her information (*Thank you!*). The orignial bill sent to her was for $100 000 before insurance (thats all in - diagnosis, surgery, drugs, the full work up). After insurance "Angela" was still left a $40 000 bill for the things that were not covered and items that were considered "non-essential"...for her CANCER DIAGNOSIS! What?! Let's just contemplate those numbers for a minute please...yep...
$100 000 (bilateral mastectomy)
$50 000 (reconstruction)
TOTAL: $518 300

That is a staggering number! And what is even more awe-inspiring is what this number doesn't reflect.

  • This number does not include my countless doctor's appointments. When I was in my early diagnosis stage with my heart condition I was visiting my cardiologist every week as we tried to iron out a treatment plan. 
  • This number does not reflect the 6 different types of drugs I took to try to treat my Long QT syndrome, and the top-notch allergy specialists I visited to try to figure out why my body would not tolerate them. 
  • This number does not reflect all the other types of tests and methods used to diagnose my condition.
  • This number does not reflect the 2 types of very expensive genetic screening I have done. 
  • This number does not reflect my maintenance appointments at the pacemaker clinic every 3-6 months for the last 8 years. 

That staggering number does not reflect a lot of things.

And despite my best attempts at leading a balanced healthy life I still suffer setbacks and complications. My heart condition specifically is something that I will have to treat and monitor for the rest of my life. There will be more appointments, more surgeries, and more questions as I age, and my life changes. The impact that Long QT syndrome has had on my life is still overwhelming. But despite all of this and my many misadventures, I have never had to question if I could afford to be healthy. I have always been given the most effective treatments and opportunities.

It is pretty obvious at this point that I sort of drew the short end of the stick genetically. My heart condition, how I have had to treat it, the BRCA 1 gene - none of this could have been predicted or prevented. I know that my circumstance sounds rare, because here I am tackling all this before the age of 30. But don't be fooled. Don't think that these struggle only belong to Krysten, or Lindsey, or James. It so easy to say this is someone else's story. It is someone else's struggle. It is someone else's problem. But the truth is Heart Disease is the #1 killer in America. And according to CDC's 2007 stats 27 million American's are diagnosed with heart disease annually. Not to mention that there will be 178 thousand new cases of cancer diagnosed this year in Canada. And Breast Cancer is the most prevelant type of cancer among women of all ethnicities. The reality is that my situation is not that uncommon. My battle is a battle that is fought every single day by millions of people. What is unfair is that some people are not given access to proper resources, nor do they have the opportunity to stand up and fight back without having to question how they will pay for it later.

I know that this post is unlikely to change the world over night. But hopefully this long winded rant made you think or even just gave you a moment's pause. So that's my Christmas wish this year - here's hoping!

Love your Favourite Darwinian Fail,


  1. I haven't been through NEARLY what you have, but I do know it's mind blowing. I remember writing a $2000 check to have a brain scan and thinking WTH do I pay insurance for?!

  2. Oh dear. Yes, as an American somewhat failed Darwinian experiment, I can contest to the expensive burden placed upon the patient. I had a rare adrenal tumor (a pheochromocytoma). Finding it, removing it, and dealing with its aftermath have cost me thousands. I'm fortunate enough to have had a job with excellent health insurance when that event occurred in my life. (That was my last job, though; my current healthcare plan has an unreasonably high deductible--$2500--that I cannot avoid because of my employer.)

    I'll stay out of the political realm because I know that there are people who know more than me, but I know that our system is in a sad state... a state of disrepair. (My sister has epilepsy and, because she can't hold a job thanks to her disability, she receives state assistance... but she has to fight to keep that, as though her condition changes...) And I know that other semi-failed Darwinian experiments like myself aren't as fortunate to have healthcare in all situations like I did. It hurts to know that.

    I'm glad that you were able to take care of yourself. Perhaps you can use your experience to further the cause. :)

  3. It's so crazy that our country is so advanced in so many ways but medical care is definitely something I know we can improve upon! Why pay insurance only to pay bookoo money for everything anyway?

  4. THANK YOU FOR THIS! What a wonderful post! It's hard for me to understand why so many of my fellow Americans are so against moving toward a Universal Health Care system, but sadly, it's all about money and politics. I hope this post does change the world!

  5. Thank you for your unique perspective on this. Can you go to Congress and show them all of it for us? ; )

    Fantastic example of how we can all benefit from universal coverage.

  6. Thanks for sharing this Krysten!! Being a diabetic myself I'm also quite thankful for our health care!! Cheers to that!

  7. I appreciate you laying it out the way you did. I've had a few insurance issues myself and since I'm self-employed, I don't have an employer who is required to cover me. I had to pay for a "minor" surgery out of pocket, and even that (along with the ensuing lab fees) was 10k. Still working on that one. I agree with you entirely-- something needs to change. Period.

  8. I'm thankful I am getting to know you, robot heart and all. A friend of mine always says "funny people do funny things." – which I think is a way she calls people stupid. LOL. I just wish we all took care of each other and spread a little humanity.

  9. Thank you for this post Krysten!! I pay quite a lot for insurance every month, and then for something so minor (like physical therapy for my hip) I paid nearly $1000 more out of pocket.
    My parents are a very good example of why insurance is good and why it still stinks. My father was diagnosed with severe Chron's disease and spen almost 2 years in the hospital. Lost half a colon and almost 10 ft of his intestines. Within the same year - my mother had a hystorectomy go wrong, ovaries tried to grow back and a subsequent surgery ended up puncturing her colon, it exploded gave her paratinitis, among multiple issues with colostomy, more weird growths, hernia repairs, and a mesh screen in her lower abdomen to hold it all in. Between them in the course of their 3 years of surgical and health issues - I believe they paid out of their pocket in addition to the insurance they had been paying for - almost $200k. Without insurance was an astronomical $800k+!!! Their issues are minor compared to others out there, too. I see a lot of good in a universal healthcare system, but I fear that it will be another lifetime before a change is implemented and the good that would come from it is actually beneficial to us.

  10. I love this post. Timely for me as Anne and I were just discussing how much my treatment, etc. is going to cost us. We've always been for universal healthcare. We are lucky and have decent insurance. It's funny though as we are both nurses yet the hospital we work at doesn't offer the best insurance. Anyway, take it from us down here in the states, you truly are lucky to have the coverage you do!

  11. THANK YOU!!!!!!!!!!!!! I have touched on this in the past. I have a lot of conservative readers so I try to be careful BUT I am so on board with you here! Right now here in the U.S., we have a divided country due to some very very very conservative right people getting into office & basically taking over the Republican party. In my younger days, this was not so - both sides worked with one another. Add to that the fact that a certain faction of that party just so dislikes our President that they will vote against him even if it is against their own interests. VERY SAD!!!

    So many like to say that the people w/o insurance are creating all the problems & are a drain on us. Well, many of these people work 3 jobs & still cannot afford insurance. As a household with me looking for work & my husband with his own VERY VERY small company that was hurt by the economy & we lost most of our senior savings in the crash - well, we struggle just to pay the bills. Finding extra for insurance is not there. IT is not that people are not trying or not working.. the typical response.

    I wish the other party had not fought so hard when we were negotiating the healthcare bill. Most of us wanted a single payer system but we got less - why - the Republican side fought it so hard & the President tried to negotiate & we got less than the best bill but better than before for sure. I know people will argue with me as happens all the time but this is my opinion on it all..

    Thank you so much for writing this!!!!! HUGS!!!!!!

  12. Health care is a right not a privilege. Amen Amen Amen.

  13. I have a special needs daughter. She has had 10 surgeries in her 3 years on Earth, and she will need more in the future. Thankfully, we have very good private insurance--but along the way we have meet so many wonderful families that just can't afford it. It really burns me up that I can take my daughter to one of the best doctors in the US at Johns Hopkins Hospital because we are lucky enough to have good insurance, while kids who don't have good health insurance are stuck with what ever doctor will take them. What makes those kids worth any less than my daughter?

  14. I am so happy you decided to speak a bit of political talk today because this is what people need to hear.

    Thank you for telling your story and I am so happy you are blessed with minimal medical bills. :)