This year for Thanksgiving, I found myself spending a few extra moments with my head down, lost in a rare moment of prayer. I wanted to be sure that the universe knew that in my heart of hearts I’m thankful for so many things, but most especially that my eldest son is a happy, active, and thriving kid.
My firstborn came into the world on cold and rainy November morning 8 years ago. The doctors and nurses were instructed to let my husband announce the gender, but in those intense first moments of life, things turned into something of a comedic drama.
“What is it?!” I yelled.
“IT’S … A BABY!” my husband shouted back.
The room was filled with laughter and high spirits, but within moments things would grow dark with worry and confusion.
The nurses performed a heel stick test on my son’s foot and it bled for three days before anyone figured out why. He had been born with a genetic mutation, causing moderately severe hemophilia, a condition I knew next to nothing about.
There are many things I’ve since come to learn about the cold hard truth of raising a child with hemophilia. It means trying to let my kid be a kid, while also trying my best to prevent potential bleeds every day. It means worrying that our insurance will not cover certain treatments or trips to the hospital. But it also means that each month, we shell out a few thousand dollars in medication and related medical costs alone — a staggering sum that has left us living paycheck to paycheck, stuck in a financial hole we can’t seem to climb out of.
Because as it turns out, hemophilia is more expensive to treat over a lifetime than the rarest of cancers and even HIV/AIDS.
Let’s do some quick math, shall we? This tiny vial of white powder is 1,153 units of medicine:
Each unit costs $1. But this vial represents just one dose of several that my son uses in a week’s time. A vial that costs my insurance company $1,153 will cost me $115.30 in out-of-pocket co-pays. When we add in other costs, my insurance company is being billed somewhere in the neighborhood of $20,000 a month to cover my son’s medical needs. Meanwhile, my out-of-pocket cost is a staggering $2,000 a month in co-pays … sometimes more.
And so, each month my husband and I leap and twist through a never-ending series of hoops in order for our three kids to not feel the cold grip of poverty, or the gut-wrenching fear of losing our safety nets — like my retirement fund or our house or soon, our health insurance.
It’s this last piece of our messy financial house of cards that has me worried the most; the one that has us living below our full financial potential and scraping to get by. Because tomorrow, my insurance officially runs out — exactly 30 days since I was laid off by my full-time job — and I’d be lying if I said I wasn’t terrified about what the future holds right now.
In some ways, we’re lucky, because not only have we met our deductible for the year, but we were also fortunate enough to sign up for a cost-saving program that covers our out of pocket co-pays. This particular program is paid for by the same pharma company that makes my son’s hemophilia medicine and rakes in millions of dollars for the drug reps selling them to doctors. States like New Hampshire are currently trying to outlaw this kind of program, which scares families like mine to death.
But for now, here we are.
When our insurance ends, exactly 24 hours from the moment that I type this story, we will be forced to accept Medicaid. The cold hard reality of our situation is that although insurance companies cannot turn my son away for a pre-existing condition, they can set the monthly premiums so high that we cannot afford them. This is exactly what happened when I attempted to purchase ACA coverage for the end of 2017 and 2018 after my position at a local newspaper was eliminated in a wave of layoffs last month.
While Medicaid will be a godsend for us in terms of having to spend far less on those vials of factor, it also means that until we can find an insurance company we can afford, we must live at or below the federal poverty line in order to ensure that my son has access to adequate care and affordable life-saving drugs.
There are also the logistical and emotional pressures we have to deal with every day, as a result of my son’s condition. After years of endless visits to the ER for intravenous injections, we finally chose to have a port implanted into my son’s chest four years ago, so that we could finally take control over his hemophilia and treat him ourselves in the comfort of our own home. This “button” as my son now calls it, is connected to a major artery in his heart. Several times a day, we insert an IV needle into the port to administer his dose. But while this is fantastic in many ways, there is a downside: only my husband and I can perform this action — so, if he gets a bleed at school, which happens fairly often, then one of us (usually my husband) must leave work immediately and drive straight to him.
Financial and emotional pressures aside, though, there isn’t a day that goes by I don’t feel eternally thankful for my little gooney kid. He is smart and sassy, enigmatic and kind; and no matter how many times his hemophilia sidelines him and we have to stop our world to treat his bleeds, he never seems to lose focus on what happiness is for him. If I only impart one lasting thing on my children in this life, I hope they all come to believe that no matter what obstacles come their way, they can choose to see it as an opportunity or use it as an excuse to stay stuck.
Our finances may be all kinds of screwed up thanks to medical bills, but I hold on to the hope that we’ll eventually climb out of that hole, and we won’t always be forced to rely on Medicaid to help us get by while we scramble. Even as I sit here, hanging on by my fingernails and holding my breath for what the future holds, I refuse to let myself : affordable health care that is fair and just for all.