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 thought...so here goes...
|Cyborg Hearts are Pricey|
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 8002. 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 5003. ICD (metronic) Device + Implantation Surgery
$75 000 - $100 000 each
$287 0004. 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,