Rees (in blue) and I are alike in the following ways: we love Alaska and have no desire to leave. We're also firstborn, sharing the privilege and funny insights of that role in our families. We both like busywork but sometimes question pursuing schoolwork to the exclusion of "real life". However, Rees is well into his second year of college and has impressive SAT scores under his belt, so he's already surpassed any academic merit I've sought. And speaking of belts, he has a black one, earned with persistence and grit that I do not possess. He's never known himself without that grit, since the most involuntary function most of us perform is the one that threatens him most. That would be breathing.
This is where his story diverges mightily from mine, from all of his siblings but one, and likely from yours and the people you know. Do you know anyone with cystic fibrosis? I didn't, until we met the Howells ten years ago.
A few days ago Rees came within a one week supply of the medication that keeps his lungs clear of the mucus that will otherwise overtake his organs. A few weeks ago it became apparent that his healthcare needs would not be met by the policy the family purchased in December (to the contrary of claims and paperwork provided by the selling broker). A few months ago Rees turned nineteen years old, facing all the normal excitement of early adulthood. Management of his symptoms is standard operating procedure for Rees and his family; the need for his lung drugs is predictable, expensive (we're talking five figures, monthly) and it hangs in the balance of a vacant phone bank.
Having CF isn't trendy like some diseases, forgive me for saying so ~ or dotted with unity-building tearjerkers like other conditions. It's a daily grind of maintenance and meds, a path that breeds strength and good humor. The Howells don't need aid or comfort for much of the trials CF visits upon them, they simply need the medicine required to keep Rees running after his dreams, wherever they lead him. He's most interested in wildlife sciences but must reconcile his passions with the reality of hospitalizations which sometimes last weeks or longer.
This isn't a rag on Obamacare or fluff about my BFF. In his mother's words,"...now when we try to get prescriptions, the pharmacy tells us that there's a 2500 deductible (5000 yearly max) when the plan is for a 250 deductible and 500 yearly max. So the broker at Enroll Alaska says that Rees is not properly loaded into the system. But Premera says it's not them; it's the Marketplace. And of course the Marketplace says it's not them; it's Premera. In the meantime, his meds are $11,000 a month. We should only have to pay the first 500 for meds, then the plan picks up the rest. That's why we can't get any meds; because according to the computer, we owe $5000 which we don't have."
In my GenX Millenial mind, this is the part where I link to a gofundme campaign, or launch into a pep talk for the people who care to stalk social media, litter offices with letters or march in the streets. But in this case, shows of caring and donations will only get Rees so far. He needs a well-placed responsive soul with the power to fix this.
He bought a product which has evaporated --- his family was mandated to buy an insurance plan and is now being given the runaround by three disinterested parties. Please pray for resolution that really helps them, now.