Insurance Coverage- the normal nightmare

Letter of complaint to the State of Wisconsin Insurance Commissioner

Please describe your problem 

I am writing in regards to the insurance coverage for my son, Ashton Fox.  Ashton was born with Congenital Hypopituitarism and teeters on the edge of PANhypopituitarism. His pituitary gland is not capable of producing proper levels of hormones for his body to grow and thrive.  This condition was diagnosed via MRI and extensive lab work by Endocrinologist Dr. -      -- at the Mayo Clinic in Rochester, MN.  Ashton has been her patient for 3 ½ years. Ashton participates in semi-annual lab draws to ensure that his hormone levels remain at an adequate level for his general health and well being. His condition requires extensive monitoring, as well as replacement hormones to supplement what his pituitary gland is not capable of producing.  His replacement hormones (growth hormone) requires a subcutaneous injection every night as directed by his endocrinologist.  On June 26^th I received a phone call from Ashton’s specialty pharmacy indicating that our secondary insurance (WI Badger Care, Forward Health) declined to cover Ashton’s prescription.  I immediately contacted our doctor who began the appeals process to have his life sustaining medication covered.  On July 3^rd the proper appeal paperwork proving medical necessity was sent from Dr.            office to Provider Services.  Since July 3^rd, I have made countless calls to Member Services only to get the run-around regarding the status of the appeal for my sons medication. Each time I have called, I got a different ‘answer’ to my problem, that all effectively leads to a dead end. Finally last week I was told by Member Services to contact the Great Lakes Consortium, as they would have the power to overturn or quicken the appeals process.  I called immediately at 2pm in the afternoon on Thursday July 12^th. I waited on hold for 35 minutes- as long as I possibly could without attending to my children. I called again today and waited on hold for countless minutes, I’m beginning to feel that it is yet another dead end.  Dr.            and her nurses have also been relentlessly contacting Provider Services to find out why Ashton’s prescription is STILL being denied.  Today Dr.           again contacted Provider Services and was told that the committee has yet to understand the need for Ashton’s Growth Hormone medication and that he would not be approved until further proof be submitted. 

This situation has escalated into an unacceptable level.  Our primary insurance (Blue Cross Blue Shield of MN) sent us a letter three months ago stating that Ashton’s medication was infact deemed medically necessary and has been approved for another year-  they required LESS proof than the State of Wisconsin about Ashton’s condition, yet BCBS could validate his condition and approve his medication because it IS MEDICALLY NECESSARY.  Both myself and Dr.              office at the world renowned  MAYO CLINIC IN ROCHESTER, MN are aghast that the State of Wisconsin cannot accept the years of documentation, official diagnosis and continued monitoring as PROOF of Ashton’s need for Growth Hormone. 

You see, without growth hormone Ashton will cease to grow, he would infact have a condition called pituitary dwarfism- as was the case up until around his 3^rd birthday when he was finally diagnosed. Ashton could not walk until he was four years old because his body lacked growth hormone during the pivitol growth periods during infancy.  Due to his congenital pituitary malformation his muscles and bones did not develop properly, he was several bars below the 1^st percentile in height and weight.  He did not have the proper hormones to grow and thrive. This year because of his successful growth hormone treatment he finally made it onto the growth chart! Today Ashton is 5 ½ years old and still quite far behind his peers in his mobility, he cannot run and stumbles a lot- but due to uninterrupted growth hormone therapy he is slowly catching up.  He has gained weight, height and muscle mass and is nearly the same size as the majority of his peers.  This is the first time in the last three years that his growth hormone HAS been interrupted (15 days now) and I worry everyday what is happening inside his body.  Are his muscles degenerating, is his linear growth being stunted, is he experiencing any physical symptoms of lack of hormones??  It makes me sick. 

I am sick to my stomach that his coverage STILL being questioned and he is STILL going un-medicated. I’m even sicker at the thought of going through this same process when our youngest son Owen needs his prescription filled.  You see, Owen suffers from congenital PANhypopituitarism and requires the same hormone replacement as Ashton IN ADDITION to thyroid medication and steroid replacement.  Owen WILL die if fully un-medicated for any length of time.

I realize my sons conditions are astronomically rare, we’ve been told that a million times by many specialists. I STRONGLY URGE you to research and understand the profound effects the diagnosis of hypopituitarism and panhypopituitarism has on the health and well being of children.  It is essential to provide a streamline and efficient approval process for children with this diagnosis.  It’s unfortunate that their condition is so misunderstood by the State of Wisconsin, even when provided with a plethora of documentation regarding the diagnosis, that you can continue to delay coverage of life sustaining medications. Shame on you.

I look forward to your prompt reply and am willing to answer any questions you may have regarding my sons conditions and medication needs.

Sincerely,

Sarah J. Fox

How would you like this problem resolved?

I would like the above described issue resolved without delay by approval of the appeal submitted by Dr.                   from the Mayo Clinic for the growth hormone prescription for Asthon Fox.  I would like to see the process improved in such a way that when applying for coverage for our youngest son that this type of delay and appeals process can be avoided for those with clinical diagnosis of hypopituitarism and panhypopitiutarism.

Coming out of our shell

Slow and steady, the turtle wins the race... if you keep up with my blogs you are well aware that this is a sort of mantra for our family.  We strongly identify with that poky turtle that just won't quit. He knows that as long as he keeps at it, he'll win in the end.  It's moments like we had this afternoon that I really feel like we are winning. This afternoon wasn't a turning point, a life changing day, or any particular celebration. This afternoon was just part of a normal day, or what I always wished a normal Summer afternoon could be for our family.

On a whim, this afternoon I invited my niece & nephew to go to the beach with me and the kiddos. I woke a reluctant Owen up from his nap early, made a few peanut butter and jelly sandwiches, got the kids in their swim suits, and packed them for the beach.  I have to admit, I was somewhat scared. We never really tried this as a family and I was attempting to undertake the activity sans Shelby.  However, I can't deny the incredible help that my niece & nephew (Nikki & Skyler) are- they're pretty much amazing kids!

Activities like going to the beach, the park, or even the grocery store with our three kids were once so overwhelming that I just shut down and chose alternative activities for us...  and then things changed.  These things don't happen overnight in our house, they happen slow and steady- and then on a day like today I just can't believe how fast it really happened.  Last month Owen's mobility presented many of the same challenges that we faced during the first four years with Ashton. Owen's need for constant assistance to walk independently was often difficult to accommodate in solo parenting situations- especially when also being accompanied by Ashton & Kiera for out and about activities. Kiera is very helpful, is a fantastic listener and quick to keep up, but is a busy almost four year old. Ashton does still require some assistance with the day-to-day things. He might just need a little extra help with his clothing, shoes, or a hand to steady himself on rough terrain, but all the extra needs combined overwhelmed me.  I just couldn't wrangle everybodies needs adequately enough to actually enjoy our chosen activity.

Today there was a shift. We all made it to the beach, the playground, had some snacks and made it home in one piece. There were no tears, no fits, just fun. Ashton & Kiera are both enjoying the water and navigating it without much assistance at all. Kiera is certainly a water baby like her Mama. She loves the lake and has not a single ounce of fear in the water. I got a chance to work with her more on her swimming skills and she even jumped off the platform into the water today! Ashton, like his Dad, is learning to love the water. He has never enjoyed the water as much as this year and today finally started dunking himself and telling me how much he loves to go underwater! Owen adopts almost the same sentiments as Kiera for the water, however he's not quite ready to tromp off on his own yet. Who can blame the kid, he just started walking this month!! He is excited to enjoy the water with somebody else, his big smile never leaving his face.

Today was a day that I think other families might take for granted, but here it's a reason to celebrate.  After the kids went to bed tonight, I just couldn't shake the feeling of real happiness. Having a normal day might feel mundane and might not be much fun, but here it's an amazing feeling to enjoy a few moments without medication schedules, occupational, speech, or physical therapy appointments, doctor visits, insurance calls, dentist appointments, eye appointments.....  and the list goes on.  Today made me realize just how often these little moments are starting to happen. We are making real memories as a family.  We're finding our own balance and siezing the opportunties that we're given to fill the moments with stuff that matters, even knowing it might not work out perfect.  We're willing to take the risks to make memories.  I'm remembering to step back and breathe and just be in that moment.  This afternoon reminded me of the hot Summer days that my Mom and Aunt would take us to Sand Lake in Sarona to swim and play the day away.... it wasn't complicated then, just fun. It makes me so happy to know my kids will have that too. <3