Thursday, November 3, 2011

Insurance and Neurofibromatosis

A few weeks ago, when I went to my mail box...I got a surprise letter, that stated that my daughter Bailey, was no longer eligible for medical coverage.

The letter stated that as of March of last year, my daughter did not qualify for coverage...My mind immediately goes to the date we discovered that Bailey  had another brain tumor...A tumor that required immediate surgery and chemotherapy.

According to the letter...NONE of Bailey's MRI's, Surgeries, chemotherapy treatments, hospital stays--NOTHING, was covered by her insurance. (Nice of them to let us know, a year after the fact-eh?)

As you might imagine, I kinda freaked out.  THIS was the whole reason I applied and was approved for disability for Bailey....To AVOID insurance issues like this one!

I immediately called the phone number on the letter, and left a message.

A day later, I get a call back from the Social Security - Medicaid office...This woman had investigated our case and informed me that a state-wide "glitch" had occurred and thousands had received a similar letter.

The woman on the other end of the phone had no idea of how much stress this had caused me.  My mind tried to add up an estimated cost of the 10+ MRI's, Chemo treatments, surgery and hospital stays...When I got to over a MILLION dollars, I stopped trying to add.

I hung up the phone and breathed a sigh of relief.  But....What if I hadn't called?  Would the issue had just worked itself out?  Could I have saved myself the stress and worry, and just ignored the letter?

Yeah...I could have.  But "ignoring" has been what I had been doing, for most of my life.  Ignoring everything about Neurofibromatosis; it's symptoms, warning signs and most importantly, I ignored a world that needed to open its eyes and be educated about this complicated condition.

Taking ACTION, is part of the E.A.S.Y. way to THRIVE!  Explained in my book 'Thriving with Neurofibromatosis'....You cannot THRIVE, without ACTION!  When you live A Thriving means your attitude and actions radiate in everything you do.

Don't Ignore...Take Action


  1. I need to buy that book or at least have the library buy it so I can check it out.

  2. Something similar happened to me! I got a letter saying my coverage was going to be stopped after I had a routine MRI, stating I never told them about my NF. But we sat with an agent and I was TOTALLY OPEN about it, swearing to him it was mild and have had no issues with it (true). So when we called the woman on the line said there was no note of any letter, any issue or anything stating my insurance was being cancelled. I was pissed, because this woman who sent the letter left me beside myself. My insurance is so high as it is...I sometimes wonder if it is even worth keeping. After that I've been too worried to get anything more than a PAP smear, I dont want to get in trouble!

  3. Hi my mum has nf and so do i . I now am a bit young but who cares really I want to now more about this. My mum has cancer n she has nf can some one plz help me ? Like what will happen to her?

  4. I have kaiser but have to fight them every now and then. My dad had to sue for kaiser to cover the left eye lost due to nf, I am talking about my ocular prothesis kaiser usual does not cover that.