Why you should care what I am paying for prescriptions.

I've been reluctant to share much about our boys medical journey lately, but the current conversation about life saving medication cost is important and I feel compelled to share my thoughts.  The media coverage is helping in a main stream way to expose the price gouging practices of the pharmaceutical companies. Nearly everybody knows somebody who needs an EpiPen and is outraged by the unexpected price hike... all unfolding while the CEO enjoyed millions of dollars in the form of a raise over the same time period. Not only is this price gouging behavior a crime to the patients, it is a crime to every American paying insurance premiums. Even if you don’t use this medication, you have paid premiums to help cover the cost of the overinflated prices set by drug companies. You might not need a lifesaving medication or medical attention today, but somebody does.  When you pay your health insurance premiums your money goes into a pool- some take more, some take less. In an ideal world there should be enough money to cover all of our medical woes. But if your premiums have skyrocketed the last few years, like ours have, it’s obvious there’s not enough money in the pool. But, why?

Greed. Extortion. Egoism.

Our boys rely on a lifesaving medication, Growth Hormone, to survive day-to-day. It not only helps them grow (as they would not without it- their bodies are incapable of physical growth due to lack of critical hormones) it helps maintain many of their vital functions. Growth hormone is critical to survival, but there’s hope! Over 30 years ago scientists created a bio-identical type replacement that can be easily administered via nightly injection and it was quickly produced by at least 4 different pharmaceutical companies… and life is restored! For many people worldwide, replacement hormones are critical to maintain vital functions for survival.  Our children would not survive without replacement hormones.  Families like ours are slaves to the pharmaceutical & healthcare insurance industry and subject to their whims. 

We have been in the middle of fierce insurance coverage battles in which the specialty pharmacy would not release the critical prescription in a timely manner due to coverage challenges out of our control. Unfortunately, much like a EpiPen patient, any delay in administration of medication could mean death. It has been plainly communicated to us that the all mighty dollar is in the driver seat, not the person who could face death when forced to go without lifesaving medication. Your life is only worth the amount of money the pharmaceutical industry & healthcare insurance industry can make off you... if you cost them too much, you might die. That is realty. We live in a ‘Hunger Games’ style reality, the pharmaceutical companies and healthcare insurance industry are the Game Makers… we are the tributes.

Two years ago it was our turn for the reaping… it was our turn to see if we could survive long enough to win the game. Our insurance company began a battle for their brand preference of the prescribed medication. Much like an elite athlete- insurance companies have drug manufacturers as sponsors… these drug companies negotiate lower prescription rates and in turn your insurance company only allows its patients to use that drug, even when many other cheaper options might be available. The specialty pharmacy would not order in the schedule II drug without a brand preference, because it is a federally controlled substance and the cost of the prescription. The specialty pharmacy could not take on the overhead of accepting delivery on a product that they may not get paid for. We, as consumers, couldn't even buy it. We had dialed down nightly dosage to half and then to a quarter of normal dosage when we could see that the insurance battle was not going to be won quickly…Ashton would be able to handle the temporary dial down, but it wouldn’t be enough to meet Owen’s needs.

We pleaded with the pharmaceutical company, the insurance company, the pharmacy, we called our congressmen, we called on everyone we thought could to help us get Owen’s medication. Finally, after weeks beyond our last dose, our insurance company won their brand preference. This battle resulted in a three-week delay of our prescription delivery, three weeks of missed dosages, a 30 minute long hypoglycemic seizure, a 200 mile ambulance ride, 4 day hospital stay at the Mayo Clinic in Rochester, and years of trauma done to a 5 year old.... I don't think our insurance company really 'won' once the insurance claims rolled in from that whole mess. But, they said they did.

As tributes, we happily do our part, because we want the ones dearest to us to live.  We give our children injections every night, they have blood draws & appointments every 4 months to ensure proper levels, we call and request refills no more than 4 days before the prescription runs out and carefully schedule delivery, we pay our premiums, we submit the mounds of paperwork & evidence required every year to prove that we were not granted a spontaneous miracle of perfect health.  We play the game, we follow the rules.

But, it’s a game and it’s a fact that 1 in 3 people will be subject to disability or life threatening illness in their lifetime.  We will all be subject to the reaping…. It’s just a matter of time.

The picture here is last month’s receipts, just one month of medication... a medication that we've seen the price quadruple over the last few years. That's a total of $6705.70 for one month, every month, forever... this is the retail price for just under ONE fluid ounce of medication. We pay our premiums and play the game, because we need to.  I don’t know a single person who could actually pay that every month, but I am not so naive to believe that there aren’t people who are forced to…. or they just die.

We are equally thankful and sickened by the healthcare insurance & pharmaceutical industry. Our coverage now nearly covers all of the balance.  But, we know that this cost is paid by us and paid by you. We feel the sting when our insurance premiums go up every year, when your insurance premiums go up every year, when our government screams that a public option to healthcare is impossible... this is why. When pharmaceutical companies & healthcare insurance industry are allowed to charge these kind of exorbitant prices we all suffer.  They are the game makers.

"Being like everyone else sounds pretty dull to most of us..."

I haven’t blogged much recently, as the main focus of my blogs are usually my children.  As they grow I am doing my best to respect their privacy and limit the amount of personal information I share about them.  But, this week as I was shuffling Owen to his four separate specialist appointments at Gillette in St. Paul I felt something, something that I felt would be worthy of a new blog entry…. I felt like we fit in.

"Being like everyone else sounds pretty dull to most of us, but for some, a chance to be like everyone else is one of life's greatest prizes."

Because of our children’s complicated medical conditions we’re regulars at major medical facilities.  It’s a bittersweet homecoming each time we are greeted by name by the reception staff. Even more bittersweet is when we see families with infants on the beginning of their journey- how isolating and lonely it is at the beginning.  A children’s hospital can be as equally magical as it is somber. As parents, we are all brought together for reasons no parent wishes for. We are all wounded from the battles our children fight and for the battles we fight for them every day. The wounds are deep, but the love we feel for our children is so much deeper. We are fueled by the fumes of hope and caffeine and we solider on to the next battle with the strength of a thousand armies. We often feel intensely defeated by the process and all the procedures, but we fight on. There is no battle too big or odds too long, we solider on- we must.  

As we hustle from place to place still reeling with information from the last appointment with emotions somewhere between maniacal laughter, desperation, hope, anxiousness, and bravery- we connect.  We see each other in these transient spaces- in the brief moments between making up imaginary games to get your child to participate in therapy, between the poking and prodding, between tough procedures, between the surgeries and invasive exams.  In the hallway, with just a passing glance we share the triumphs and pain that is parenthood for people like us- and in just a nanosecond we find the comfort and strength to carry on.  We are not more or less of a parent than any other, but we are as different from normal parents as our children are to the world.

But, this is one of the things that makes children’s hospital magical.  It’s where we are like the rest of the world. There is such a strong sense of community and comradery among the families that walk the halls and sit in the full waiting areas.  There isn’t a sideways glance to be found or snide remark to be heard because, we have all seen and heard enough to last a lifetime.  Without speaking a word to each other, we all share so much.  Our most precious gifts are with us for everyone to see.  Our children with glasses, speech delays, birth marks, scars, wheel chairs, developmental delays, assistive technology, cochlear implants, feeding tubes, and every other medical related challenge imaginable- all together.  We pass along small smiles, compassionate glances, and giggle together when our children do silly things, but not a single ounce of judgement is passed. 

Our lives are filled with the same joy and pain felt by every parent on the planet, but with a splash of insecurity, fear, immeasurable hope, and unbelievable pain. Incredible amounts of energy are expended by a special needs parents in effort to make things as simple as grocery shopping be effortless.  In almost all ways- nothing is effortless. Nearly every success is a product of meticulous thought, planning, and preparation. The planning and preparation for some of life’s simplest errands can be exhausting.  We have learned to plan and manage the day-to-day excursions just fine, but what we can’t plan for is how people react to our unique family. It’s not uncommon to get a questions now and then about Owen’s flashy red glasses, his speech challenges, or his very visible medic alert tag- and for the most part these people are very polite and are asking with the best of intentions. I like those people, because I know they’re good. They seek to understand our family and I’m an open book for people like that.  Those moments have become easy to manage and not embarrassing in any way.  The part I have the most difficult time with is the people, families, and children that are old enough to know better- who can’t control their impulses to turn and stare or worse yet, yell at audible levels to another person within their direct group to, “Look!” 

If you’re reading this, I highly doubt you’re one of those people… and if you can believe it- Yes, it happens.  It happens more than you can imagine.  I refuse to ignore those kind of people, because I think it’s unacceptable to let them think that they can continue to carry on with such atrocious behavior.  I’ve done my best to passively confront these people with a stern look or witty comment- those are the moments I’m always on guard for. I want to shield my children from the cruelty of the world as much as I can… and if it takes me slinging insensitive and rude behavior right back, so be it.  

But, as I sat eating a snack with Owen in the waiting area I noticed I was kind of relaxed.  We were just having a snack, that’s it… not another thought in the world.  Just me & Owen having apple slices in a room full of strangers, who all undoubtedly seen us, but didn’t pause a second to analyze us.  I wasn’t on high alert hovering over Owen to wipe the bits of food that sometimes creep out his nose as he eats, I didn’t worry that his glasses were on straight, I didn't worry about the bags under my eyes or having a coffee stain on my pants from the rush of getting out the door at the wee hours of the morning, I didn’t worry about Owen's sometimes overly friendly nature making anyone uncomfortable, and I didn’t worry about new kids giving him the googly eyes or hiding from him. I wasn't on guard. I didn’t have a worry in the world… it was just as it should be. Just me and Owen having a snack. It was such a strange feeling to feel so at ease in a place so full of people we didn't know. But these weren’t just people, they were people just like us…