Saturday, July 7, 2012

My Health Care Story

In the light of the news of Obamacare, or the Patient Protection and Affordable Health Care Act, I thought I would share with my readers my health care and insurance, or lack there of, story.  There are so many awesome things coming out of this new Health Care Act!  I know it will take a few years for them to go into action, but they are happening!
It all started when I was eleven. Both of my parents had lost their jobs, and in turn, our family lost our health insurance.  I had severe ear infections.  One night, I was crying because my ear hurt so bad, and my parents didn't know what to do.  They gave me some acetaminophen to try to make some of the pain go away.  In the morning, they got me an appointment with a Community Healthcare Clinic.  They took me in and got antibiotics for the ear infection.  They told my parents that, if I was going to start going there, they would need to do a full physical.  So, my parents had one done.  It was because of The Community Health Clinic, we found out I had ureter reflux.  The nurse practitioner that worked there was very vigilant on figuring out why I had a kidney infection.  She sent me in for a Voiding Cystourethrogram.  This test is pretty invasive, but it had to be done. I've had numerous done from 11-14 years old. (Hi, yes, we want you to pee on the table here, in front of us!) I've had more than I can count!
After that, I had to have a Ureter Reimplantation surgery.  I was eleven.  My parents had not found jobs with insurance yet, and I had to have a major surgery! (It was major then.  Now, it's basically out patient surgery!)  The clinic insisted I go ahead and see a specialist and get this done.  So, my parents took me to the specialist, scheduled a date, and I had the surgery.  The cost at the point was $10,000-$15,000!  My parents did not have that money! I remember them going in and talking to the hospital social worker about it.  In one of these meetings, I remember the social worker handing them a piece of paper stating, the cost had been taken care of!  How it happened, I don't know.  A person or organization could have done this, or the hospital knew they were never going to see a penny, due to my parents situation, and wrote it off.
Within a short amount of time after that, it was suggested that my parents sign me up for an insurance called, "The Crippled Children's Fund."  I got approved, and all of my health care was moved to Riley Hospital for Children in Indianapolis.  The insurance also soon changed the name to "Children with Special Health Care Needs."  (I just looked it up, and this program still exists!)
By the time I was 13 years old, the doctor at Riley had found out that the reimplantation surgery had not worked.  He scheduled another surgery to do the Ureter Reimplantation again.  This time, my surgery was covered by the Children with Special Health Care Needs insurance.
After that surgery, my kidneys kept deteriorating. I stayed on that insurance until I was 19 years old. At 19, I started dialysis. When I started dialysis, I was placed on Renal Medicaid and Medicare.  A social worker came in to talk to us.  She basically said, you have to get a real job with insurance.  You're not going to get one with a music performance degree! Around the same time, my mother got a job at Meijer at 65 years old to get herself and me insurance.  I was going to college, and she did not want me to quit.  
I got my call for my kidney in November of 1999.  I was 21 years old.  I was trying not to flunk out of college while being sick and on dialysis.  A new social worker came in.  I was and IU Medical Center, the adult hospital. She was a lot more brash with me.  She was one of the first social workers to ever make me cry.
Transplant Medicare only lasts three years.  Transplant Medicaid, the insurance that pays for the $5,000 a month in transplant anti-rejection meds, the state can take away from you whenever they feel like you are capable of working.  It doesn't matter if you're going to school and trying to get a degree.  You're capable. I was told, to quit school and get a job! I didn't want to quit school!  My IU Med social worker, the one that made me cry, she told me to get a job at Walmart. So, I did.  She said, Walmart gives insurance!  I never received insurance through Walmart.  In fact, the people that were trying to be full time were getting screwed out of their insurance.
This is how it works:  Walmart would schedule the employee four 36-40 hours for two weeks, and then, bring them down to 20-30 hours, which is not full time, for two weeks.  Thus, negating the employees eligibility for insurance.
Finally, we figured out that Medicare would pay for more of a percentage of my medicine than we had previously thought.  My mother was getting my meds from a pharmacy in Lafayette.  The man that owned the pharmacy was also a transplant recipient.  He never made my mom pay for the left over cost of the medicine.  How she worked that out, I may never know! Then, my time on Renal Medicare ran out, and I was without insurance.  I still had to get blood work done.  I still had to get my anti-rejection meds. 
I went back and talked to my social worker.  She encouraged me to put the thousands of dollars of meds on my credit cards, until, she finally got me on a program with the pharmaceutical companies to provide me with my prescriptions at a discounted cost.  I still had to go in for the blood work and labs, or the transplant doctors would not keep prescribing my meds.  This became very expensive, and not paid for after a while.
I was on the pharmaceutical  program for my medicines until I finished my internship, and I got hired at my job.  The first day I was not an intern, my boss signed me up for insurance IMMEDIATELY.  He did this with no questions asked, which is a miracle.  Luckily, I've been insured for the entire time I've worked for my company.  Another good thing is, the medicines I am on are now available in generic.  That's lowered the price considerably.
My big worry is about the future.  What if I try to get on my husband's insurance, and they say no all based on my preexisting conditions?  What if I have a child and quit my job to be a stay at home mom?  I have to be insured!  There's no way I can afford Health Care without insurance!  I'm still in debt from the first time around without it.  
Oh, and remember how I said that some of my labs didn't get paid for?  Well, I started getting calls from a collection agency out of the blue a few years ago.  The woman assigned to my case started harassing me on a daily basis at work!  I told her I didn't have the money yet.  I was willing to make payments, but I didn't have payment in full.  Basically, she told me, I should have died instead of getting health care!  I had no right to health care if I couldn't afford it! 
Health insurance is not a privilege!  It's a civil right!  Not everyone thinks like I do.  They also probably haven't had to live without health insurance during a time of illness.
For you that are out there saying, "Why don't you just get a job?!"  You are probably the same conservative people that are saying, "You should be a stay at home mom!"  Unless my boyfriend gets a ginormous raise in the next year or two, I'll probably be a working mom, just so I can have insurance.
These are my experiences in dealing with Health Insurance.  

1 comment:

  1. This is one of those stories that shows why we need universal, single-payer healthcare. It was said so long ago that healthcare is a right, and the late Senator Kennedy believed it, when he saw people selling their homes for a few months of cancer treatment for their children. Heather, you are the poster adult for this cause. Thank you for sharing your story. Please continue to do so!