Once a month, I open my shipment of Enbrel refills and see a receipt with two numbers:
Medication Cost: $3,200
Patient Responsibility: $0
That’s pretty nice.
But more importantly – and more interestingly – it is indicative of a salient fact for many users of the United States healthcare system. Unlike most other forms of insurance, health insurance is unique in that we pay pre-defined premiums not just for protection against large, unknown future costs, but also as protection against known costs that we can anticipate.
This reality is even more pronounced after the passage of the Affordable Care Act and the provisions about guaranteed issue – the idea that an insurance company has to offer plans to eligible people regardless of their health status. In other words, they can’t deny you coverage based on a pre-existing condition. So, many people who have ongoing, expensive healthcare needs use insurance as a mechanism for getting access to medications and treatments that they would otherwise be unable to afford.
So you can imagine my surprise and stress when I called in a refill of my Enbrel last month and the pharmacist said, “I’m sorry Mr. Stayman, your insurance ended last Friday. You no longer have health insurance.”
What I didn’t know at the time was that I actually did have insurance – the Duke student health insurance plan had not yet updated in the system – and that I would soon be able to refill my medication. For that week, all I knew was that I was out of medication and out of a reasonable way to pay for it.
The problem was not a concern that I would never be able to get covered again – although that is a legitimate worry for some people – but instead how long my gap in coverage would last. For many people in my boat, successful health outcomes rely on consistent treatment adherence. In my case, if I miss one dose it’s not the end of the world; if I miss two doses, I start to hurt.
Would my gap last a week? Inconvenient, but manageable. Would it last two weeks? Now we’re getting into trouble.
Trying not to go into panic mode, I started to identify and weigh my different options. Number one – get in touch with the Student Blue health insurance office and see what’s going on. Multiple messages, no responses. Number two – perhaps the Duke Rheumatology clinic has free samples they give out, and I could get one or two to tide me over until the insurance mess gets straightened out. No luck – due to regulatory burdens, the clinic no longer gives out free medication. Number three – Amgen (the manufacturer of Enbrel) offers millions of dollars each year in copay assistance to patients; maybe I can get them to send me free medication while I work to re-enroll in my student health plan. No dice. Amgen has a program for people without health insurance, but you have to apply (which takes a few weeks), by which time I would be hurting already and probably have my insurance back anyways. Option four - just pay the $3,200 for the medication. Not going to happen.
So, what am I getting at here?
There is a robust literature showing that consistent treatment adherence is crucial for chronic condition management and avoiding negative health outcomes. For many people, the ability to stay adherent hinges on access to health insurance.
There are a lot of issues at play in this one brief story: the cost of the medication, the ease of enrolling in (and staying enrolled in) health insurance, cost-related non-adherence, the accessibility of safety net programs that help people bridge gaps in coverage… the list goes on. I would like to take a few installments this semester to begin to unpack some of these issues.
For now, I would leave you with this: Atticus Finch (although perhaps now a bigot) famously says in Harper Lee’s “To Kill A Mockingbird,” “You never really understand a person until … you climb into his skin and walk around in it.” Until last month, I could never have imagined what it would feel like to not know when you would next be able to access medical care. Even still, I have no idea what it is like to chronically experience that stress.
As we begin to think about how to get more people more access to health care, we have to consider the hurdles – systemic and personal – that stand in the way of coverage. How can solutions create a better system, and how can they ease the individual’s participation in that system?
With election season upon us, I urge you to pay attention to what candidates on both sides of the aisle propose. And think critically, when you can, about the implications for people with varying levels of access to care.
Max Stayman is a Trinity senior. His column runs on alternate Fridays.
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