It’s time to start fixing our country’s gaps in healthcare access
When healthcare coverage narrows, the effects are more than an inconvenience
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During a recent car ride, my wife, Jill, and I were listening to a podcast about healthcare, a topic I’ve become more familiar with in recent years. One comment surprised me: Many of the approximately 6o million Americans who live in rural areas don’t have access to basic healthcare due to a lack of nearby hospitals.
Before Huntington’s disease (HD) entered our lives — Jill is gene-positive for HD — that number probably would’ve flown over my head. Now, it feels personal.
The podcast prompted an interesting conversation between us, and Jill shared a story about her early days of working at a cardiac medical practice, long before her diagnosis. Back then, she was learning the rhythms of patient care, including scheduling, charting, and getting to know the people behind the paperwork. Memories of one particular patient who had to drive two hours each way for his appointments stayed with her.
At the time, Jill didn’t think much about it. Cardiac issues are common, and there seemed to be plenty of medical practices around to treat patients with those conditions — or so Jill thought. She remembers wondering why anyone would go to such lengths for something that seemed to be so routine.
Eventually, she worked up the nerve to ask the patient about it directly. His answer was simple and direct: There weren’t any clinics or hospital systems where he lived.
Creating a more stable healthcare system
Jill was perplexed by the response. She had grown up in a community with a lot of resources, the kind of place where you don’t question whether care exists, only which provider to choose. Access was a given, and convenience was normal. She’d never considered before the idea that someone can live hours away from basic medical care.
That conversation changed something in her. She went home that night and started researching why access to healthcare looks so different depending on where someone lives. She discovered that it isn’t just about geography — it’s also about economics, infrastructure, and policy.
Entire communities lack investment in healthcare services. Hospitals have closed or were never even opened. Specialists are concentrated in wealthier or urban areas.
Later that week, she spoke with the chief financial officer of a locally affiliated hospital. What he said shifted her perspective even more. He explained how programs like Medicaid are often misunderstood.
Before these types of assistance programs existed, access to healthcare for low‑income individuals was extremely limited. Many people delayed treatment until conditions became emergencies. Hospitals absorbed the cost of uncompensated care, which strained the system and ultimately affected taxpayers.
But programs like Medicaid aren’t just about assistance. They also help to create a more stable system in which people can receive care earlier and closer to home. That idea seems pretty relevant today.
Recently, I wrote about Huntington’s Disease Society of America Centers of Excellence, which are specialized clinics that provide coordinated, multidisciplinary care. They are invaluable but not evenly distributed. For many families, accessing one means hours of travel, logistical challenges, and financial strain.
Jill and I are fortunate. We have access to care that many others do not. The more I learn about the healthcare system here in the U.S., the more I realize how much that access is shaped by factors outside any individual’s control.
Jill still thinks about that patient. Because Jill is living with HD, she understands more deeply now what it means to rely on consistent, specialized care. She also understands how fragile access can be and how dependent it is on policies, funding, and decisions made far beyond any patient’s control.
When systems change and coverage narrows, the effects are not abstract. They show up in longer drives, fewer options, and harder choices. A patient’s two‑hour drive isn’t just an inconvenience; it’s a reflection of a gap that still exists for far too many people.
For families like ours who are navigating a complex and horrible disease, those gaps matter.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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