Playing a game of Russian roulette with his life

Another backboarded body rolls in. I slip from my perch at the computer and greet the emergency medical technician.

“Seizure. Lasted a few minutes, done by the time we got there. Fell and cut his face.  Vitals stable. Sugar fine. Oriented but postictal.  Didn’t take his meds.”

Approximately my age, the backboarded man’s chin bears a ribbon of red laces.

“Dammit,” he says. A glance at the cardiorespiratory monitor shows me suitable hemodynamics, and I begin a cursory neurologic exam.

“Hello, sir, I am Dr. Smith, the resident working in the ER today.  It seems you have had a seizure, has this happened before?”

“Yes,” he groans. “I didn’t take my meds.  How could I let this happen?”

He raises his hands to his face, pulling them away to reveal blood from the laceration sustained on his chin.

“I am going to lose my job,” he says. “I have to work!”

His eyes are earnest and desperate.  I think of my father.

“When were you diagnosed with epilepsy?” I ask him.  A primary seizure disorder in early adolescence.  I learn further that he is uninsured and cannot afford his medications.

When he takes his medications his illness is controlled.  He does not seize in his employer’s store room. His startled co-workers do not call 911. He is not delivered by ambulance to an emergency department where evaluation and treatment incurs a bill several magnitudes greater than the cost of his preventive medication.

He understands that he is playing a game of Russian roulette with his life every day he doesn’t take his medications, but the money isn’t there.

I irrigate and drape the wound on his chin and lean over him, suture in hand, to repair the injury.  I reflect on several months prior, when my mother called me to tell me my father was in the intensive care unit back home, hundreds of miles away.

“He wouldn’t stop seizing.”

I was sick to my stomach as I arranged an emergent flight home.  I arrived at the hospital after the excruciatingly long trip and rushed to my father’s room to find him intubated and receiving a propofol infusion.

Two days later he was delirious, begging my younger brother and I to remove the restraints holding him to the bed.

Three days later he was ambulating slowly down the hall.  In a week he was in a skilled nursing facility, working with therapists to learn compensatory mechanisms for the memory deficits incurred.

Then the bills arrived.  My parents, with insurance that many would consider excellent, were still charged several thousands of dollars.  The focus on my father’s recovery was undermined by anxiety.  The retirement planning that had been underway was deferred — they both would need to work for a while longer.

I tied the last suture on the young patient in front of me and removed the drape.  He was suitable for discharge.  I arranged his prescriptions and set up an appointment in my clinic for follow-up.

“I will be there,” he said, absentmindedly tucking the paper into his pocket.

I surprised myself with the cynicism I felt in response.  I am far too young in my training to have my idealism threatened, but the system — as it is — fosters skepticism.

I want my patients to be able to afford the evaluations and treatments that will prevent undue physical, emotional, and financial morbidity.  I am about to embark on my career in primary care and will work earnestly to provide preventive and affordable care — work I hope our health care infrastructure will allow.

Sarah Smith is an internal medicine-pediatrics resident. 

Playing a game of Russian roulette with his life

This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.

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  • Arby

    If he cannot afford his medication, how will afford the fine from ACA or reach a deductible? Another non-solution that pretends to help the working poor.

    • Gibbon1

      Under the ACA my out of pocket costs went down. A big problem however is the deductible for prescription coverage. For people on higher cost medication, you end up having to pay your whole deductible every January. Which can be a few hundred dollars. A problem is patients with no credit or in a bind financially (AKA all low income workers) this can be a hurdle that is hard to cross.

      This part and parcel of the madness of the US system. You do not want patients skipping their meds because they don’t have the cash flow to afford them this month.

      • SteveCaley

        To butt in – where is the pressure to consider and use the cheaper medications? A new regulatory burden is not helpful, but how do we get people treated with less expensive medications – other than the copay-er discussing it with the prescriber?

        • Arby

          Feel free to butt in. I have no issues.

          Why isn’t the pressure to prescribe cheaper medications coming from physicians? I would think we wouldn’t need regulation for them to ask their patients about being able to pay for their meds.

          Also, the $4.00 list of meds used to be great at Wegman’s until they whittled it down to just a few meds. I think Wal Mart still has a fair amount of them. Not a long term solution, and buying meds online or on the street will probably be the route many working class people take. I’ll be exploring online now that my insurance has changed and it is pretty horrible. Still better than lowest exchange I can get (including with the subsidy).

          • SteveCaley

            It is routine from me in my care – no matter WHAT insurance plan, I usually look at the cheapest prescriptions, most often those are also first-line and best-studied.
            There is incredible separation between physicians and the knowledge of costs of medications. Build THAT app and they will come.

          • Arby

            I haven’t tried their App (just saw that they have one now), but I do use their website. Google the term GoodRx. Their pricing is not perfect but it is in the ballpark.

            Back in the day, I used to work in pharmacy. Pharmacists were often calling doctors to get cheaper meds for patients. I noticed RPhs are much less likely to do that today. I think they are suffering under managed care/corporate policies as well.

  • SteveCaley

    Phenytoin from an on-line international pharmacy is 20¢ and can be dosed BID. The side-effects of elevated levels are nontrivial, but less dangerous than seizing. Internationally, “The lowest-paid (international) government worker would need wages from 1-2.6 days’ to purchase a month’s supply of phenytoin” (Epilepsia. 2012 Jun;53(6):962-9. doi:)
    I have walked patients to the (in-house) pharmacy and bought them a month of HCTZ when they didn’t have $10 to buy a month’s supply. (I believed this patient 100%)
    In the rest of the world, the old baseline seizure drugs – phenobarbital, phenytoin, carbamazepine – are generally available and affordable. I have some doubts about this patient’s veracity in complaining about costs. COX-2 inhibitors, maybe. But not the firstline seizure meds.
    I thoroughly agree that “I want my patients to be able to afford the evaluations and treatments that will prevent undue physical, emotional, and financial morbidity. I am about to embark on my career in primary care and will work earnestly to provide preventive and affordable care — work I hope our health care infrastructure will allow.” Simple seizure disorders can often be medicated dirt-cheap, and are done so in the Third World. This patient cost thousands of dollars, and the question is – why?

  • SteveCaley

    I was challenged to consider that we cannot speculate on Dr. Smith’s patient, which is entirely valid. Whether or not he can afford the medication, his compliance, his own level of disease education, is completely opaque to us here. With no more information on the patient, we can say nothing more about him.

    What we CAN do is look at other countries, and see how they address the treatment – keeping the seizure patient seizure-free. How does disease treatment go in the growing economies, and in the poor ones?

    If the rest of the world did things the way WE do things in healthcare, NOBODY could afford medical care, except for the vanishingly wealthy at the very top. We should look at developing countries, especially the “Next 11″ and ask how THEY are doing things, compared to us. I’m sure they don’t order multi-thousand dollar medicines for their average patients.

    It is especially important, because here in America, it’s become trendy to speculate about “cutting out the middle levels of healthcare”, and going app-to-pharmacy HiTech, in some concepts of American Medicine. It’s attractive to insurers, as it puts the liability on the patient, not the healthcare system. That’s what goes on in places like Guatemala and Nigeria, as they may have fewer doctors per-capita. Is that the model we want? When the dust settles – will doctors become a luxury item, as in Haiti, for the privileged class but not for the average person?
    How will we get there from here – and how do we know that’s where we want to get to?

  • SteveCaley

    That could be. What about the idea which some people propose that refills for most Rx’s are OTC after the first prescription is given? (if you don’t follow up with the physician, though, any complications become your own fault.) Who would this help – and hurt?