Our daughter, Emma, should have celebrated her 17th birthday this year, but we tragically lost her to cancer when she was just shy of her fourth birthday. In the midst of this heartbreaking ordeal, we experienced a stroke of good fortune: living in London at the time permitted Emma to receive her care from the National Health Service (NHS), a government-funded, single-payer healthcare system where medical treatment is available free of charge to all.
Throughout Emma’s six-month illness, we seldom reflected on this reality. Why would we? During her time at London’s Great Ormond Street Hospital, our focus was solely on caring for our spirited little girl. Having resided in the UK for several years already, it felt normal to exit the doctor’s office without financial concerns or to collect a prescription for our children without incurring any costs.
Looking back, I realize that being able to disregard the financial aspects of Emma’s treatment was an immense privilege—one that should be a standard in any compassionate society.
In the United States, the concept of freedom is often linked to minimal government intervention in daily life, particularly in healthcare. We found the opposite to be true during our ordeal. When Emma first exhibited alarming symptoms—intensifying after hours, a familiar scenario for any parent—we had the freedom to visit the emergency room multiple times without worrying about hefty co-pays or whether an insurance company would deem her symptoms—fevers, loss of interest in her favorite shows, and my gut feeling that something was amiss—as legitimate emergencies.
Once doctors pieced together the shocking diagnosis of a rare and aggressive cancer, the British healthcare system continued to afford us that same freedom. Rather than spending hours negotiating with insurance representatives, we could snuggle next to Emma in her hospital bed and sing her favorite Disney songs. Instead of battling with insurance companies over coverage for tests or procedures, we read her enchanting fairy tales, whisking her away to magical worlds beyond the confines of the hospital room. With no overwhelming hospital bills to scrutinize, we were able to focus on the cheerful drawings from her nursery school friends.
We witnessed firsthand how government-funded healthcare provided solidarity for other families in the ward. One family traveled from a remote village for specialized treatment, staying in free accommodation near the hospital at the government’s expense. Another father received government-subsidized leave to care for his son. Emma’s friend from down the hall, enjoying a brief remission from her neuroblastoma, had an aide provided by the government to tutor her at home. All of these families had the freedom to remain close to their ill children, striving to maintain some semblance of normalcy without adding financial stress to their medical crises.
Ultimately, the only bill we paid during that harrowing six-month period was for Emma’s meals at Great Ormond Street’s Peter Pan café, where we treated her to plates of sausage and mashed potatoes on her good days. In essence, it was British taxpayers who funded everything else, including Emma’s exorbitantly priced stem cell transplant. In a humane society, kindness prevails. When one suffers, the system is designed to cushion the fall. Anyone could find themselves in a similar situation—any day.
Just weeks after returning to the United States following Emma’s passing, I noticed a flyer in a grocery store promoting a spaghetti dinner fundraiser to help cover a local person’s cancer treatment costs. This revelation struck me harshly. Why must individuals beg and scrape together funds for essential medical care?
Now, having lived here for over a decade, it feels dishearteningly normal to view medical care as a privilege rather than a right. As discussions regarding the future of healthcare in this nation continue, I often reflect on our experience in the UK. Thankfully, certain protections established by the Affordable Care Act remain intact, for now. Insurance companies can’t charge pediatric cancer survivors higher premiums due to their increased risk of secondary health issues. More families on Medicaid mean fewer will face the nightmare of battling cancer without adequate insurance.
Yet, shouldn’t we strive for more? Shouldn’t every family grappling with a serious illness have the freedom to concentrate on their loved ones without the burden of financial concerns, just as we did with Emma?
Achieving universal access to high-quality healthcare is no small feat, and there may be various paths to reach that goal. However, we must aim high. While we may never eliminate the suffering cancer inflicts on families, we can certainly lessen its impact.
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In summary, our experience with Emma’s illness highlighted the profound importance of accessible healthcare. It allowed us to focus on what truly mattered—our daughter—without the added stress of financial strain. We must strive for a system where every family can experience this freedom.