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I Was Told I Had 6 Months to Live. That Was 20 Years Ago.

May 2, 2026
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Twenty years ago, I was told I likely had 6 months to live.

I was 22 when I had a seizure and woke up on the floor of a coffee shop in Little Rock, Arkansas. Imaging showed a large tumor in my right frontal lobe, and within hours I was transferred to another facility. They said it was likely glioblastoma — a deadly Grade IV brain cancer. Days later, I underwent a craniotomy and woke up expecting radiation and chemotherapy, trying to process how quickly an adulthood that had just begun could be reduced to a short and uncertain timeline.

That trajectory changed because of a second opinion. Weeks later, at MD Anderson Cancer Center, the pathology was re-read and the diagnosis was corrected. It was not glioblastoma but a lower-grade ganglioglioma, and the surgery had been curative. What had been framed as a terminal diagnosis became, almost overnight, survivable.

That experience did more than alter my prognosis. It shaped how I understood healthcare — not as an abstraction, but as a system in which outcomes depend heavily on access: access to expertise, to second opinions, and to institutions capable of getting the diagnosis right. This was all palpably reinforced by the fact that I had nearly forgone health insurance when searching for my first job out of college, during the year before my tumor diagnosis.

I carried that understanding with me as I continued in public health and moved deeper into policy and politics. When human papillomavirus (HPV) vaccination emerged as a way to prevent cervical cancer, I supported it publicly at a time when doing so was politically fraught. I was early in my career and had ambitions in Arkansas politics, and there was no ambiguity about the risk. The debate was already polarized, and aligning with the evidence was not necessarily compatible with the political incentives.

But my perspective had already shifted. I had seen what it looks like when disease is discovered too late to prevent illness. Supporting a vaccine that could stop cancer before it started was not a difficult policy decision — it was a logical extension of that experience. That choice shaped the direction of my career, pushing me toward the harder, less visible work of figuring out how prevention actually happens in practice.

Over time, my focus moved beyond any single issue to the structure of the system itself — how recommendations are translated into care, how coverage decisions influence behavior, and how small points of friction can accumulate into missed opportunities for prevention. The gap between what medicine can do and what patients experience is rarely about the science. It is about whether the system delivers that science consistently.

I saw that gap again in 2017, when an MRI revealed another tumor and I underwent a second brain surgery. By then, I had a deeper understanding of the fact that my outcome would depend not just on clinical care or health insurance, but on real-world access. I was able to get to Johns Hopkins and receive care from one of the leading neurosurgical teams in the country. That did not happen by accident. It reflected the network I had built and my ability to move through a complex system quickly.

Most patients do not have that advantage. And once you see that clearly, it becomes difficult to accept a system that relies on it.

That realization has shaped how I approach prevention. The goal is not simply to develop effective interventions, but to build systems that reduce how much outcomes depend on timing, navigation, or who a patient knows when something goes wrong.

That is why the current direction of vaccine policy is so concerning. Prevention depends on stability — on clear recommendations, predictable processes, and consistent communication to both providers and patients. When those elements are disrupted, even in subtle ways, the system becomes harder to rely on. Providers hesitate, patients become less certain, and the small gaps that already exist begin to widen.

I did not set out to become a litigator, and I certainly did not expect to find myself suing the secretary of Health and Human Services. But after years of working to strengthen vaccine access and confidence, I reached a point where watching the system erode was not an option. As lead counsel representing medical organizations, I brought a case against Secretary Robert F. Kennedy Jr. to challenge actions that threaten to undermine vaccine policy and destabilize the very structures that make prevention possible.

That decision was not about politics. It was about continuity. The same experience that led me to support prevention early in my career now compels me to defend the system that delivers it.

Looking back, what stands out is not just that I survived, but how dependent that survival was on circumstances that are not widely shared. A second opinion corrected a life-threatening misdiagnosis. Access to high-quality care made treatment possible — twice. Those are not conditions most patients can count on.

Prevention offers a way to reduce that dependence. But it only works if the systems behind it are maintained, trusted, and allowed to function as intended.

That is ultimately what is at stake.




Source link : https://www.medpagetoday.com/opinion/second-opinions/121070

Author :

Publish date : 2026-05-02 16:00:00

Copyright for syndicated content belongs to the linked Source.

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