“We’re on the losing end of a medical lottery”: Richard’s Story

Our daughter, Sara, was born 7 weeks premature in December, 1989.  She was delivered by emergency C section at NYU Medical Center at approximately 2 lbs.  Her weight dropped to about 1.6 lbs. on the first day of her life.  My wife and I were told on numerous occasions by a team of very competent NICU doctors and nurses that our daughter was "very sick" and had only a slim chance of surviving for a few days.  Her primary problem was significantly underdeveloped lungs and associated infection.  

My wife and I were both heartbroken, yet resolute in our intent to see her through this trauma.  Sara was a very strong personality from the beginning.  We could see her fight for every breath.  And, fight she did.  After three months in NYU's NICU, we finally brought her home only to be forced to return her to the NICU a few days later with symptoms of pneumonia.  She finally left the hospital for good a couple of weeks later.

At the time, I worked for a major management consultancy out of the New York office.  We had what was regarded as pretty much standard health insurance for the time, an "old fashioned" 80/20 plan that most everyone had.  But, when you add up the costs associated with months in the NICU, they become overwhelming.  Our insurance paid for the standard 80%.  We were responsible for the 20% plus any costs above "ordinary and customary" charges.  When the bills are in the hundreds of thousands of dollars, the 20% and the "overages" beyond ordinary and customary charges are exorbitant.  We filed for personal bankruptcy within months.

To shorten a very long story, our daughter is now a thriving 24 year old.  The irony is that she was a 2008 graduate of Lawrence Academy (LA) in Groton, MA, Mr. Armstrong's high school alma mater.  Mr. Armstrong is a member of the Board of Visitors at LA.  Our daughter is a member of the Young Alumni Council.  We hope that she will one day meet Mr. Armstrong and tell him her story.  She has since graduated Magna Cum Laude from St. Lawrence University and is a thriving commercial composer.

In spite of the fact that the costs of her traumatic birth bankrupted us, we managed to survive.  And, our daughter has thrived.  Without the care and compassion of the NYU NICU staff, she would not have survived and become the smart, creative, beautiful daughter that she is.  We are eternally grateful to the NYU NICU staff.  The insurance issues and the personal costs were a small price to pay for our daughter's life.

What is insurance for if not to help pull someone out of the morass of severe healthcare circumstances and keep them on their feet?  We (your family and our family) were innocent victims of a healthcare roll of the dice. 

File this under “It gets worse.” Six months after Sara was born, my wife, Dana, was diagnosed with multiple sclerosis.  MS is an auto immune disease in which the body attacks healthy cells, in this case the protein based myelin which coats the nerve fibers throughout the brain and spinal cord, rendering various physical functions inoperable temporarily at first and then permanently over  time.  So, Dana and I have been fighting her MS for 24 years now.  

In 2005, caring for her became impossible as a part time job.  So at 52, I "retired"  from the corporate world and dedicated myself to taking care of her.  We left our 43rd floor apartment in Battery Park City for my mother's 3 bedroom cape in a small town in Massachusetts to cut costs to the bone. We have been here ever since.  Dana is now completely disabled from the waist down, confined to bed and wheelchair.  To make matters worse, she has suffered some dementia from the disease which has made caring for her even more challenging.

The correlation between MS and stress is also well known.  MS is a stress triggered disease.  As stress worsens, symptoms worsen.  So, Dana's disease was truly a nightmare on 9/11/01.  We lived in Ground Zero on that fateful day in the Gateway Plaza complex on the Hudson River within a block of the World Trade Center.  My daughter's bedroom had a direct view of the towers.  I was in my office at 25 Broadway.  When the planes hit, Sara had started her first day of school on the Upper West Side. Dana was at home by herself and scared to death.    

After the second plane hit, I ran home to take care of my wife.  But, the towers crumbled covering us in dust and taking out several of the buildings surrounding us. Because of Dana's MS, I couldn't get her out of the apartment and away from the disaster.  So, that first night we slept in our apartment to the sound of the sirens, the screams, the nightmarish, surreal background of the tower pits visible from our daughter's bedroom. We finally walked out the next morning. The stress was immeasurable.  And, the effect on my wife was precipitous.

During this time, just two weeks after the disaster, my employer decided to lay off the entire New York staff (I was a Managing Director responsible for the Banking and Brokerage segment).  So, we were homeless and I was jobless.  

But, we survived. And, in a much less glamourous world, we continue to survive.  The stress of 9/11 marked the beginning of the end for Dana.  Her physical capabilities deteriorated rapidly over the next three years thus forcing my "retirement" in 2005.

I tell you this story not for sympathy.  But, to demonstrate a point.  The shame of this circumstance has been the healthcare and health insurance system that blames the victims.  Somehow, we are perceived as shameless takers, an experience that you have shared recently.  Yet, we had no hand in the creation of our circumstances.  

Dana has been a Medicare patient since 1997.  It has saved us to some extent.  But, it has no tolerance for serious chronic illness.  We are again stuck with the 80/20 issue.  Medicare covers 80% of most medical expenses.  But, when you are held responsible for the 20% of a large healthcare cost, it can be devastating.  

Our move to Massachusetts was partly fortituous, I grew up here, and partly by design.  We moved to a state with the best health insurance in the country.  The commonwealth's healthcare coverage has been a godsend.  When I left New York in 2005, I had no health insurance.  In 2006, I applied for coverage under the Massachusetts system, Commonwealth Care, and was accepted.  Four years later, I was diagnosed with prostate cancer and underwent 40 days of radiation therapy.  So far, I'm fine.  But, without the Massachusetts health insurance system, I would still have the cancer growing in my gland and preparing to overwhelm me.

So, you can see how much worse it can get.  And, how the healthcare insurance system can still defeat you. 

As you continue your battle against the victimology mentality of today's health insurance system and its corporate ramifications, remember how it has affected others and will continue to affect many more to come.  We may be victims of our diseases and circumstance, but we are far stronger and more resilient because of it.

I know that we, Dana and I, did nothing "wrong."  We're on the losing end of a medical lottery that could affect anyone.  We're all one heart attack or one aneurysm or one birth trauma from disaster.

-Richard, Massachusetts