Leadership
Health Care Under Trump

No Stories Without Data, No Data Without Stories

Article · October 18, 2017

I’m a physician, a scientist. My artsy friends find data-filled articles wonky and dry; my doctor friends find story-filled articles anecdotal and not convincing. My belief is that they are both right. In an age where we need credible, rigorous data and the power of story to create understanding about the human impact, I think one simple rule should guide health care decisions: no stories without data, no data without stories.

In the face of the current debate over ACA repeal and Medicaid, I can’t help thinking of my grandparents. When I went back to visit their house in Sikeston, Missouri, I was amazed by the small size. I remembered it as a place for cousin-filled Christmas celebrations and shucking corn fresh from the backyard garden. My grandmother raised a family with five children in a two-bedroom house, living on my grandfather’s salary as a lineman for the electrical company. It felt like home and love and warmth, but in retrospect, the garden was necessary to ensure a stable food supply for a family living on the edge of poverty.

When my widowed grandmother started her long decline into dementia, she had little savings to draw on. Fortunately she qualified for Medicaid, so when her care needs became beyond what the family could offer, she was able to get excellent support in a nursing home. The care helped not only my grandmother, but also the entire family in seeking a safe and compassionate way to deal with a devastating condition.

Many people I speak with are surprised to learn that Medicaid is the dominant payor for nursing home care. Medicaid (the insurance program designed for people on the bottom rung of the socioeconomic ladder), not Medicare (the program for people over 65), foots about half of all nursing home bills in the United States (including long-term services and supports). In 1960, 9% of the U.S. population was over 65; in 2015 that increased to 15%. With an aging population, the risk of dementia and other diseases of longevity will continue to increase.

These demographic changes point to increasing the dollars flowing into Medicaid if we are going to offer compassionate care to those who raised us. Yet in Congress’s proposed ACA replacement bills (the AHCA and BRCA) and in President Trump’s budget proposal, Medicaid funding would take an $800 billion hit over 10 years. If Medicaid is cut so sharply, where will people like my grandmother go?

Another surprising fact about Medicaid: almost half of the babies born in the U.S. are covered by Medicaid. As an expectant mother whom I met put it, Medicaid “saved her life.” Claire (not her real name) had been uninsured in her late 30s, got coverage around the time she became pregnant, and was found to be diabetic on her initial exam. She received excellent specialized prenatal care and had a healthy child. Without that care, both she and her baby would have not only been at high perinatal risk, but her son at higher risk for potential lifelong complications.

When we talk about figures like $800 billion, it’s abstract, an unimaginable number. When we talk about Edith Calhoun (my grandmother) or Claire (the new mom), the human toll of dramatically reducing the medical safety net becomes more clear. It’s critical we know the economics of health care — the statistics and outcomes and odds and facts essential for progress — but also remember to listen to the stories of the human beings on the receiving end of the policies we develop. We need data and stories to understand the whole picture, big and small. $800 billion is not just a number; it’s human lives, our parents’ legacy, and our country’s future. Policymakers, politicians, physicians, and the public share the job of giving voice to and understanding both the stories and the data.

 

This post originally appeared in NEJM Catalyst on July 26, 2017.

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