When the world shifts and our health care needs change, we hope that we will have access to a nimble and responsive health care system, fully resourced and able to change protocols in order to meet the needs of a moving target.
This has become personally relevant for me as my wife has a couple of underlying health conditions that make her vulnerable to exposure during the pandemic. She has chronic lung disease and an immune deficiency disorder for which she has been treated successfully for 20 years. She has been going monthly to her clinic for immunoglobulin (intravenous) infusions that have kept her healthy, even robust, for 20 years. She sits in an infusion room with many other patients coming and going over the course of the three to four hours she’s there.
In this age of the coronavirus pandemic, however, it is no longer safe for an immune-depressed patient to sit in a room with other patients or even enter a health care clinic, a judgment supported by immunologists and infectious-disease doctors. Consequently, home infusions have become required to complement the self-isolation measures she and I both have taken.
Making this change from clinic- to home-based infusions has left my wife negotiating a gauntlet of health care and insurance providers, including immunologists, pharmacists, home health care workers, and insurance administrators. We have been left to find home health care providers who can do my wife’s infusions and who are covered by insurance. We also, on our own, have needed to find a pharmacy that carries her medication and more. This has led to numerous phone calls and hours of explaining, re-explaining, linking providers with one another, and circling back multiple times for follow-ups, clarifications, and some cathartic unleashing of pent-up frustrations.
My wife has felt vulnerable, scared, and alone in negotiating this system of care and getting her needs met. Her physical vulnerability has been compounded by the circumstances, making her emotionally fragile and stressed, which only increases her susceptibility to infection.
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This pandemic has exposed how underprepared, under-resourced, and cumbersome our health care delivery system is to meet the demands of a worldwide and national crisis. And such shortcomings are only exacerbated by a president and administration which seems more concerned about public relations than public health.
For individual patients like my wife, this crisis has exposed how inefficient the system can be, especially when a change is needed in a patient’s health care treatment protocol. These are inefficiencies that engender worry, frustration, stress, and, potentially, disease.
It should be noted that my wife has encountered some caring and responsive administrators dedicated to helping get her needs met. However, in the absence of information accessible to providers and even administrators and in the total absence of coordination and communication between systems of care, the burden of getting her needs met seems to be totally driven by our perseverance and tenacity.
I saw my wife — who is exceedingly smart, competent, and resourceful — reduced to tears trying to chase down accurate information while being shuttled back and forth between a variety of systems and individuals. She even had her infusion medication held hostage until she agreed to pay an exceedingly expensive copay even prior to there being a determination of her case. It is noteworthy that the infusion is provided at no cost in a clinic setting but requires a $1,200 copay if provided via home health services.
The pandemic has demonstrated that our hopes for an integrated system of health care are a distant and inaccessible reality as we huddle in our isolated cocoons hoping we won’t need a ventilator and a healthy doctor with a mask and a gown. I am left wondering how many patients can’t even begin to negotiate the nuances and complexities that make up our health care and insurance maze and are then left untreated or experience massive levels of financial debt.
We are way overdue for an overhaul of our health care system that will provide universal, accessible, responsive service for a normal range of health care needs, as well as for those exceptional moments and circumstances that might require the mobilization and involvement of multiple systems of care.
Dr. George Abrahams of Grand Marais and St. Paul is retired after a career as a licensed psychologist.
