Evenings in our house oscillate between routine and existential. I prefer the ones where we mostly muddle through the mundane, and the ever-present threat to health and to normalcy goes largely unobserved, acknowledged only in the subtle ticking of insulin metered out by my six-year-old daughter’s pump into her body.
Every few nights we change the part of her insulin pump that delivers medicine just beneath the surface. Every time, the scent of insulin, a smell I associate with hope, transports me back to when she was diagnosed with Type 1 diabetes as a toddler. Our days and nights were split into a “before” and “after”—a vanishingly short period of her life without diabetes, overshadowed by the indefinite insulin-dependent stretch ahead.
Although I’m a physician, it was only when my daughter was diagnosed that I realized how vital, intricate and interdependent our health networks are. I became acutely aware that my daughter’s survival hinged on multiple complex systems, most outside my direct control. At any moment, a complication within one could bring serious trouble. It only takes one support to give way for the entire bulwark to collapse. One insurance denial, one supply chain disruption, one technological failure, one job loss, one accident, one financial setback, one executive order.
Thanks to advances in medications and devices, my daughter and others with Type 1 diabetes can do everything their peers can do. But that is true only when all aspects of their wellbeing align. Patients and caregivers must exhibit exceptional vigilance, creating multiple contingencies to fill any anticipated gaps. Sickness versus health hinges on uninterrupted access to medically necessary interventions and care. Children with chronic medical conditions are extraordinarily vulnerable. They also develop incredible resilience, which I see in my daughter.
Until just over a century ago, before groundbreaking research led to the discovery of insulin, diabetes was often fatal. Families watched helplessly, unable to save loved ones from becoming progressively sicker and dying. Without insulin, the body cannot use certain nutrients for energy. Within days or even hours, a child with diabetes can develop ketoacidosis, a serious condition requiring intensive care. Even with cutting edge diabetes treatment, my daughter’s risk for diseases that affect her heart, her kidneys, her vision, and her brain is much higher than it would be without diabetes.
All of our children, no matter their background, rely on access to nutrition, proximity to specialty care, medication availability, pharmaceutical development, insurance coverage, family resources, and more. Even a temporary interruption of just one resource might land my daughter, or any of the hundreds of thousands of children with diabetes, back in the hospital—or worse.
President Donald Trump’s recent executive orders targeting medical research and other national and global health initiatives imperil all children, regardless of their medical needs. Any approach that scatters scientific studies or limits our collective ability to get life-saving medications and help to vulnerable patients and places where they are most needed poses a threat to our children, the world, and our humanity.
My daughter is alive today because ninety-eight years before her diabetes diagnosis, medical research identified an effective treatment. Science spared our family the tragedy of inevitable loss. Previously untreatable and deadly conditions such as smallpox, polio, and syphilis now have been eradicated or have cures. People generally live longer and have better health outcomes as a direct result of scientific research.
Science follows evidence and methods. Sometimes the scientific process produces unexpected results. New findings yield new recommendations. Breakthroughs cannot be timed or predicted. Scientific successes often require decades of research. The Trump Administration mistakes science’s adherence to principles and reproducibility for inefficiency. It fails to realize that in the long-term history of medical advances and discoveries, efficiency and innovation are not at odds with one another.
Periods of upheaval like the one we are navigating endanger both our present and future. Slashing scientific funding and abruptly ceasing clinical operations for treatable conditions will not protect our children, will not make us safer, and will not save us money. It will only impact our ability to get life-saving advances out of minds and labs into production and distribution for the patients who need them. One day that patient might be you, or your child.
This column was produced for Progressive Perspectives, a project of The Progressive magazine, and distributed by Tribune News Service.
