Friday, February 16, 2018

Insurance has all the POWER

Insurance has been compromising the health of Brayden. 

Brayden’s secondary insurance went through a major over haul (throughout VA).  I attended meetings, phone calls, talked with other parents and reviewed all paperwork.  I made the best, educated, decision that I could make.  The transition to the new secondary insurance has not been a smooth one.

Our primary insurance changed.  Jeremy started his own business two and half years ago.  We needed to sign up for individual/family plan.  The ONLY plans available to us were those on Obamacare/ACA/  Brayden’s existence/life is considered a PRE-EXISTING condition.  We are not eligible for most health insurance plans because of Brayden.  The ONLY good thing to come out the ACA was being eligible for health insurance regardless of a pre-existing condition.

Getting a little political here… The ACA was good in theory.  But there was no plan to pay for it.  Thus insurance companies, hospitals, doctors, etc. were not paid enough, in a timely manner, etc.  The result – many insurance companies, hospitals, doctors have dropped, no longer participate in ACA programs.  Starting in 2018 only two insurance plans were available to our family (again because Brayden is a pre-existing condition).  Cigna Connect and Kaiser.  Neither one great choices for anyone with chronic health troubles.  A side-note: any prior administration, as well as the current administration, have no great plan for healthcare.

Now imagine changing, arranging all of Brayden’s doctors, medications and medical supplies.  That is around 100 items (I know because I have been on the phone with the insurance companies going over it all).  Below is a list of some of his DME supplies.

Just in the last 24 hours, I have spent approx. 7 hours on the phone. 

Our new primary insurance denies just about everything and asks for approval, review and/or prior authorization.  We have needed to find a company that would provide all of Brayden’s medical equipment:  Feeding tube supplies and Nutrition, Ostomy, Oxygen, and Suction.  This should have been happening the beginning of the year.  It is now February 16 and the company that our insurance company assigned to us has not delivered one thing.  If one thing on the list is something they question, the entire thing seems been held up, without much explanation or reason.

Brayden food is Elecare Jr.  A powder (like you would make baby formula).  Not available at the stores.  The formula has been on hold with the insurance company.  Every time I call, I get a different answer as to why.  He has been on this formula for many years.  Lots of documentation and prescriptions supporting that he needs Elecare Jr.  Brayden only gets food via j-tube and there are few options that can work for feedings in to a j-tube (tube in to his small intestine). 

Brayden's ostomy supplies have been a mystery.  The insurance company assigned us to the equipment company.  Doctor sent over scripts for it all.  We wait and hear nothing.  I talk to who knows how many people.  And just yesterday I speak to a supervisor who told me they do not even have ostomy supplies and we need to find another company.  Um, this info would have been helpful weeks ago.

As for all the other supplies.  Last night, we actually got a phone call from the equipment company after 9:00 p.m. saying they were not able to deliver Brayden’s oxygen supplies tomorrow.  I asked when they would…they had no idea.  As I have been typing this, I received an automated call (from an Ohio number) that a delivery will be coming today.  It did not say from where or for what...but something should be coming today.

Some person sitting at a computer, as ALL the power over Brayden’s medical care.

The medical equipment company is a broken system all on its own.  Apria’s call center has no patient care.  They sure can transfer you and put you on hold and give you some BS answers as to why your son is not receiving supplies the he needs to LIVE.
Part of his tube, clogged with beads
And now Brayden’s secondary insurance.  Denying mediations and some supplies.  One medication we have been fighting for 3 months.  They do not like anything the doctor's office has been sending to them.  It is not enough for approval.  The solution for was Brayden to try the over the counter medication.  Which has been a disaster.  Again, Brayden gets things through a feeding tube, has no motility in his stomach and needs a very tiny bit of concentrated medication (since he cannot handle much).  The OTC med breaks down into small beads.  These beads clog everything.  And causing problems that should not even exist for Brayden.  We are still fighting with them about approval.  Brayden’s case manager (for this secondary insurance) has been fighting for Brayden to get the proper med.  Brayden’s pediatrician has spent too much time on the phone and with paperwork, fighting for him to get it.  And Brayden’s nursing company has been advocating for it too.  And still…some one sitting at a computer can over power all of them with insurance codes and approvals/denials.

Another medication, that we previously were able to fill last month, is now being denied by his secondary insurance.  Their response to Brayden’s doctor??  “Has Brayden tried other alternatives to this medication?”  Um, why would he try different ones if this has been working (for 8 yrs., by the way)?  It is a common medication, used by many.  This morning the insurance company told me that he needs to try the dissolvable tablet (as opposed to the liquid).  Again, Brayden’s gets this med into his j-tube. We are not “trying” other alternatives.

The insurance companies are literally compromising Brayden’s health and life.

As we fight through all of this we have been paying for some things out-of-pocket (for some things that have been covered for 10 yrs).  And we have been given supplies from other families (who have reached into their back up supplies to help us out) and used most of our back up supplies.

Nov 2017, all of Brayden’s needs were being met.  No troubles with insurance.  Things he needed were always ready, keeping him healthy and alive.

Starting in December 2017, every week has brought new challenges with insurance.  I have cursed more in the last few weeks than I have in my life (and I am not one who curses on the regular so my choice of words and how to put them together may have been a bit more comical sounding).  I have cried more about insurance troubles and frustrations, than I have cried in probably a few years.

I feel like Brayden’s medical team (who is AMAZING) and I have no control over meeting Brayden’s needs.

And if you know me, not having control, does not suit me well.  Yesterday, I needed control over something so I cleaned and purged many items from the garage.

Lord, help us.  I am exhausted. I am so tired of being stressed, especially over stuff that I should not be stressed about.