10 July 2015

It's not about whose fault this is. It's about who can fix it.

I have spent the better of the last 36 hours since our discharge on the phone with...

Blue Cross Blue Shield of Texas
Texas Insurance Commissioner's Office
Baylor University's Health Insurance Department
Academic Health Plans
The Cystic Fibrosis Foundation Legal Hotline
The Cystic Fibrosis Foundation Patient Assistance Resource Center (PARC)
The American College Health Association (ACHA)
Scott and White Hospital

...most of them many times.  And what I have learned in the last day has been eye-opening to say the least.

The questions I have asked in about 100 different ways is:

How could this happen...and HOW DO I FIX IT?!

How can a health plan get away with simply not covering a part of the body?
Doesn't the Affordable Care Act prevent this from happening?
Does the Affordable Care Act mandate this not happen?
What are the Essential Health Benefits under the Affordable Care Act?
What does Chronic Disease Care mean as an Essential Health Benefit under the Affordable Care Act?
Is there an appeal process?
What is the appeal process?
Who do I appeal to?
Who do I appeal to after that?
What does my doctor need to do?
How can I get the care Bennett needs?

Hours and hours on the phone have provided me some really helpful conversations today.

The Texas Insurance Commissioner's Office complaint line was incredibly helpful.  I could listen to them talk all day.  They were so knowledgeable and helpful.  One of the things I learned is that I have the option of appealing the insurance company in writing on two levels as well as the option of filing an official complaint with the Texas Insurance Commissioner's Office.  (I surely wish my doctor would have told me I had this option this yesterday before we went home.  An immediate written appeal would have been appropriate.)

I spoke with Jim, a lawyer at The Cystic Fibrosis Foundation Legal Hotline, who also did a fantastic job walking me through how things like this work and explaining to me what power I have as a caregiver in this situation with regard to the law.

And somehow I found myself talking to a past president of The American College Health Association (ACHA) who also was a wealth of information.  She helped me understand how student health plans have changed over the years due to the Affordable Care Act, the current laws that exist and what options I have going forward.

But the best call of the day came from Baylor University and Academic Health Plans.  

Baylor University's student health plan is a non-federal self-funded health plan.  (This is not something most consumers know or even care about. I certainly didn't know. But it's something important I stumbled upon in my research.)  Baylor University works with Academic Health Plans to oversee this student health insurance.  Blue Cross Blue Shield of Texas is contracted to be the insurance carrier of this plan.

Mid-day today, Brian received a call from both Baylor and Academic Health Plans asking for us to submit a letter of appeal to them so that they could help us get a provision for an exemption to allow Bennett to have his surgery.  I didn't have the privilege to get to talk to them when they asked for the information.  But as soon as I heard this information, I went immediately to writing and submitting an appeal letter.

I was almost shaking when I wrote.  How do I pencil the right words to help convince someone to make the decision to help my child??  What if I fail to say it perfectly?  Will my words make a difference?

Unfortunately, I found myself very frustrated at my physician's office today who, despite my repeated calls, chose not to furnish me with a written letter of appeal by the end of the business day, despite the fact that I contacted them via phone/electronic messaging six times throughout the day stressing a letter of medical necessity was needed and time sensitive.  

You would think that after yesterday's failure by the hospital staff to inform us until our child was being admitted for surgery that insurance had denied the surgery, they would taken the time to help us make an appropriate appeal.  But alas, they did not.

So, I have cleared my schedule to be will be there in person at the front desk bright and early on Monday morning to make sure I get it then.

In situations like these, it's easy to want to find someone to blame.  It's easy to ask, "whose fault is this?"  But I understand that things are more complicated than that.  I don't think there is any one person to blame.  

Besides, I don't really care anyway.

All I care about is getting Bennett the medical treatment he needs.

Right. Now.


  1. Bennett is so lucky to have you and Brian as his parents. You are incredible advocates for him. I hope something comes of your appeals. Hugs!

  2. You know, I doubt his surgery actually costs $24K. There's collusion going on behind the scenes to keep the prices high so the hospital can reap the profits.

    The Surgery Center of Oklahoma is a free market cash-only facility that does lots of surgeries and has an excellent reputation. They are transparent about their pricing (much, much cheaper) and have prices published on their website:

    I'm willing to bet there are comparable surgery centers near you in the DFW area. Just a thought if you get nowhere with your insurance provider. Will be praying for you and your family.

  3. I should also mention those cash prices cover everything. The surgeon, anesthesiologist, and facility.

    Might be interesting to call them either way and explain your circumstances. The owner of the facility is a blogger about everything wrong with the insurance industry. Check out "Dr. Smith's Blog" on the link above.


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