Knowledge Isn’t Enough When Action Costs Too Much

I struggle to understand why people support policies and leaders that make healthcare less affordable and accessible for everyone. Voting for these measures harms our collective health and security. This isn’t about partisanship, but a human issue. When protections are lost or costs rise, families and neighbors become more vulnerable.

For people like me with hereditary cancer syndromes like Lynch syndrome, that vulnerability is a daily reality. Living with Lynch syndrome means ongoing responsibilities and costs. Each year, I spend $5,000 out of pocket on important screenings and preventive care, including colonoscopies, endoscopies, lab tests, genetic counseling and imaging. Even with insurance, deductibles, copays and uncovered costs add up. As healthcare costs rise and coverage changes, my out-of-pocket expenses keep increasing. The bills for the same routine care are higher, and it’s getting harder to keep up with regular care.

Now, I often have to choose between getting important medical care and keeping my long-term financial stability. With Lynch syndrome, information only helps if it leads to action, but taking action is getting harder. Learning about our genes and recommended care is helpful, but it means less if the system limits our options.

Today’s political changes make it harder for many people to stay healthy. When insurance covers less, preventive services are cut, and genetic testing becomes harder to get, people with conditions like Lynch syndrome face even more challenges. We’re told to be proactive about our health, but affordable care is essential. When access is limited, reaching our health goals becomes much harder.

Sometimes I wonder what it would be like to live in a country where healthcare access doesn’t depend on money or politics. No one should have to move just to get better healthcare, but I still think about it.

I’m puzzled by support for policies that worsen these issues. Perhaps some don’t realize the consequences or haven’t experienced health insecurity. Misinformation spreads fast. People are told that programs like Medicaid help only others or that fewer regulations mean lower costs — even though rules protect those with preexisting conditions. Healthcare insecurity affects everyone. Cancer is not political. When policies cut coverage or funding, people delay tests or can’t afford genetic testing. These are real consequences.

Politicians often talk about “budget cuts” or “efficiency.” But those words don’t show what’s really being lost. What’s actually being cut are screenings, checkups, surgeries, medications and peace of mind. What’s really being cut are futures.

Still, I try to stay empathetic and remind myself that many people vote the way they do because they truly believe it’s right. They worry about jobs, taxes and freedoms they feel are at risk. Sometimes, people don’t see how these issues connect to their own healthcare until something happens, and then they understand.

Sharing our experiences matters. Talking about life with genetic syndromes, dealing with insurance or handling medical bills helps others understand what it’s really like. It shows that healthcare is a human issue, not just a political one.

Even with these challenges, I stay hopeful. Researchers are developing new treatments and improved screening tools for Lynch syndrome, and advocacy groups continue to push for coverage of genetic testing and early detection. Patients also share their stories to raise awareness and help others.

I appreciate the resilience and support in this community. Policy decisions can make life harder, but they don’t weaken our commitment to advocacy or caring for each other.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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