U.S. health care has many well-documented shortcomings. However, it is often assumed that, because we invest so heavily in technology and specialists, our health care system performs well for patients who have rare or complex diseases.
New research shows that we should be skeptical of that assumption. A recent study in the Annals of Internal Medicine compares the health outcomes of U.S. and Canadian patients with cystic fibrosis, an incurable, genetic disease that affects about one in 10,000 people in both countries. The results are disturbing: on average, Canadian patients live 10 years longer than American patients. And the gap has been widening for the past two decades (see exhibit).
Median Age of Survival for Patients with Cystic Fibrosis over Time
The researchers suggest the likely culprit is the significant gaps in health insurance coverage among U.S. children and adults under age 65. Uninsured patients with cystic fibrosis, they find, face a much greater risk of early death than their insured peers. Of particular note, given recent events in Washington, D.C., Medicaid patients have significantly better health outcomes than those without insurance, despite the fact that they tend to be poorer and more socially vulnerable.
In Canada, of course, there are no uninsured: the government provides universal health coverage for all residents, without copayments for physician visits or hospital stays. (The study also finds that Canadian patients are much more likely to receive a lung transplant than U.S. patients—shattering another common assumption about the U.S. health system’s technological superiority.)
When one considers the medical needs of people with cystic fibrosis, it is obvious why lacking health insurance could lead to an early death. The disease causes abnormal secretions to impair functioning of the lungs, pancreas, and other organs, which in turn leads to infections and lung damage, and prevents the body from properly digesting food. Inhibiting the build-up of these secretions and ensuring proper nutrition and wellness are crucial to preventing the rapid progression of the disease. In this context, staying well requires constant self-management and frequent contact with the health care system—which comes at a cost. Coverage gaps and financial barriers to care are incredibly dangerous for these patients and can quickly undermine their health.
And while several promising pharmaceuticals that treat cystic fibrosis have hit the market in recent years, these are priced at a quarter of a million dollars . . . per year. High-quality care is simply out-of-reach for patients without insurance.
In medical terms, we might call uninsurance a “comorbidity”—one unique to the United States among all industrialized nations, and just as deadly as pneumonia or diabetes.
The study is a reminder, if one was needed, of the fundamental problem with the U.S. health insurance system: not everyone is covered. The focus of would-be health reformers should be—not solely on whether the 20+ million Americans who gained coverage under the ACA should be allowed to keep it—but rather how to extend those gains to the 28 million remaining uninsured. For some, their lives will depend on it.