cancer · special needs parenting · Uncategorized

Big Pharma, Epi Pens, and the Medically Complex Life

People are righteously outraged over the recent price hike on Epi Pens, and rightfully so.  As a parent of a child who has required life sustaining meds, I’ve had an ambivalent relationship with Big Pharma for years.

Pharmaceuticals save my child’s life, there’s no other way around it.  The doctors and other scientists who have developed the meds and do the rigorous work to get them approved are heroes.  There’s no doubt that if Ben had been born in another time or place, he would not have survived his first 2 years, let alone 10.5.  From the depth of my soul I am grateful for the medications which save his life and sustain his wellbeing.


The flip side of that coin is cost. 

We are well insured.  Between our primary insurance and Children’s Special Health Care Services, much of Ben’s medical costs are covered , yet there are still many things we pay for out of pocket, and at the top of that list is meds. 

Ben’s thyroid med is considered “dispense as written”, which means that even though generics are available, his pediatric endocrinologist is concerned about variations in quality in generics, and insists that Ben get the original.  That means we pay out of pocket, because even with a pediatric specialist’s professional opinion that name brand is necessary, our insurance declines to pay.

We’ve had meds denied because they costs thousands of dollars a month,  and worked with doctors who slip us samples until generics become available, and even then the generic costs insurance over $1000 per month.  I am neither a scientist nor an economist, I am simply a parent who struggles to comprehend how 30 pills can cost over $1000.  Sadly,  this is only one of many meds with mind boggling price tags.

My hope is that with the Epi Pen outrage we will finally make headway in managing the cost of pharmaceuticals.  As I have indicated, we’re the lucky ones with comprehensive insurance coverage, I can only imagine the plight of those not so fortunate.  We cannot allow families to face the choice between making a house, utility, car or grocery payment to pay for meds, and we cannot put families in the position of going without meds in order to make the house payment. 

I don’t know solutions, I don’t understand all the ins and outs of the pricing of medications. I do know that years of research comes with a hefty price tag, and recognize that the cost must be passed on to the consumer, but there must be a solution, and we need to come together to make it happen. 

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