Monday, February 28, 2011

The dollars and sense of it....

Today my husband came home early from work for the first time in almost a year.  I would've loved to think it was to spend more time as a family but unfortunately that is not our reality of late.  With my diagnosis, the loss of my income and the added cost of medications, gas back and forth across the lake each week for appointments and the day to day expenses that just come with life Jon has had to take every opportunity to make extra money.  What does he get for this extra hard work?  Well this week it seems he's run himself down and ended up with a bit of exhaustion and the flu. 

Before I dosed him with NyQuil and sent him to bed in a surgical mask he told me a little about his day.  Particularly about a meeting they had at the dealership regarding health insurance.  For those of you that don't know, or are just now beginning to read my blog my family and myself were uninsured at the time of my diagnosis.  This, unfortunately, in today's economy and job market is not an unusual thing.  Basically we gambled in order to cut corners to pay bills and other debt (most from past medical issues when I did have insurance) and just couldn't afford the nearly $1000 per month premium to insure our family of four.  Not to mention what we would have paid out of pocket before meeting the $5000 deductible.  Then of course there were the pre-exsisting conditions that would keep me uncovered but still paying premiums for the first year. 

It was an expense we couldn't take on.  It was a gamble that we took and on April 27, 2010  and we lost....big!

The first bill we incurred upon my diagnosis was for my ER visit to Slidell Memorial which was just over $16K.  Then there was the 28 day stay at Tulane Medical for just over $335K.  At that point, with discharge from Tulane looming on the horizon and no idea where or how I was going to pay for the treatment I'd already received and the remaining care needed to save my life our thoughts turned from cost to pure survival. 

Jon felt defeated. 

As if he had let the family down.  As if his decision to make sure we had money to pay our mortgage, utilities, car notes, feed our family, etc had somehow been made only by him.  He immediately felt immensely responsible for the scrambling that both mine and his mother took on to find a way to get government assistance or search for some program that would assist us with my treatment. 

We didn't have to look far, although now looking back I don't know where I pulled the energy from to jump through all the hoops they put in front of me to achieve the little gold card for a program called Free Care from LSU/Charity Hospital.  I had tried for Medicaid and was successful in qualifying for what is called the "spend down" program.  This plan looked at our income and earning potential then matched it against our medical debt accrued for a particular time period.  Seeing as I had already amassed closed to $350K, I was a shoe in.  The celebration that broke out when I got word of the coverage was almost as jubilant as when I found out my first bone marrow biopsy came back clean.

Qualifying meant that the close to $350K owed would be whittled down to just under $8K that I would ow for the care received from diagnosis until the end of June.  The joy over the Medicaid though lasted for all of 3 months.  After June 30, 2010  my coverage under that plan and the prescription drug assistance that came with it was canceled due to my income being too high.  Since I had qualified for the Free Care program through LSU/Charity Hospital where I was receiving all of my treatment I, in the eyes of the Medicaid office, had no medical debt to match against the piles of money they said Jon was raking in. 

I felt like we were in a free fall and had no idea where this would leave us.

Once again, Jon (for reasons that I think only a man who has a family that is dependent on him can understand) felt as though he had failed me once again.  Funny how my husband who bust his ass 7 days a week feels defeated over working too hard and there are people that sit on their ass all day collecting government aid, food stamps and get full Medicaid benefits.  While we are left deciding what medication is truly necessary to my survival and weighing that against what bill is due when and how are we paying for groceries.

It's a broke down system.

Your punished for being upstanding, tax paying individuals but if we quit our jobs and contributed nothing we wouldn't have to worry about where or how I'd pay for treatment.

So today he went in to work with a fever, feeling like crap, hacking up a lung and probably spreading it to all his co-workers (sorry guys) because that's what he has to do to provide for us.  Around 10am the guys were called into a meeting about open enrollment for health care.  As usual they were given no time to take it home and discuss it with their spouses or check into which option would best suit not only their health needs but also what they could afford financially.  Jon said after just one look he knew that once again we would not be able to handle the premiums. 

They had gone down from the last meeting at this time last year but were still just over $900.  The agent running the meeting brought up the fact that the General Manager was surprised by the fact that only 20-30% of the employee's at this dealership had elected health care coverage in the last round of open enrollment and it didn't seem as if that number would be going up after today's meeting while other dealerships in their corporation showed 60-65% of employee's with coverage.  He asked if anyone was willing to share as to why that was.

Not one to shy away from speaking his mind Jon put his hand up and when called upon said simply, "when it comes to choosing between paying for this or my mortgage I'm going to choose my house".  Jon said the agent thanked him for his honesty and the meeting let out.  After heading back out into the shop to work on another vehicle Jon had no less than 7 other employee's come up to him and echo what he had just said.  The cost of health care, given these economic times, is just too high.

I would say it's hard to believe but I'm living it every day. 

I am grateful that there is a program available like the one through LSU/Charity Hospital.  I am eternally grateful that the doctors and nurses there, along with the cooperation of my immune system, body, mind and soul, have gotten me to remission.  I am saddened though because I know that I can't be the only person that has to struggle through this maze of bureaucracy and ridiculousness that is our health care system.

Health care is the only service provided where you cannot get a standard price up front prior to treatment.  I know because for the years prior to my diagnosis we payed out of pocket for every appointment, test, procedure, x-ray, etc that we had and attempting to get a price out of health care facilities was about as hard as the U.S. Armed Forces trying to pinpoint the exact location of Osama Bin Laden. 

It's sick and disgusting that we as a Nation of consumers have allowed this sector of commercial enterprise have so much power.  Maybe the argument shouldn't be so blindly focused on the issue of Universal Health Care but on how health care providers, pharmaceutical companies, health insurance and the entire health care industry as a whole needs to be reigned in.  If I'm gonna buy a house I know the price before I sign on the dotted line but if you want to perform surgery to remove a diseased organ or give me medication to help save my life you can't give me a price for that service??  Ridiculous and disgraceful.

I can't make sense of any of it.  And that's my two cents, for what it's worth.


  1. How are you doing now?

  2. I wish that I could say that I am doing fabulously, but that would be 1/2 truth and 1/2 lie. Mentally I'm doing great. Medically....every day brings a new challenge.