When I listened to Senator Ron Johnson speak recently, what stayed with me was not the political framing but the clinical reality underneath it. He described people who have spent five years fighting to be seen, heard, and believed so they can access proper treatment. He argued that HHS needs to provide a specific code for these injection injuries so the harm can be documented properly rather than scattered across vague categories. The resistance, he suggested, has roots in earlier decisions and a reluctance to admit where things went wrong.
I understand why this feels charged. Once you create a clear diagnostic label, it changes how data flows, how research is funded, how care is organised, and yes, how liability might be assessed. But that is precisely why the code matters. Without it, we are choosing to keep these cases diffuse and harder to study.
A lesson from stomach ulcers
This reminds me strongly of the H. pylori story from thirty years ago. The medical consensus then held that stomach ulcers were caused by stress, diet, or excess acid. The idea that a bacterium could survive in the highly acidic stomach and drive chronic inflammation and ulceration was widely dismissed. Barry Marshall and Robin Warren faced significant pushback, and Marshall eventually drank a culture of the organism himself to prove the link. Once accepted, eradicating H. pylori with antibiotics transformed outcomes for ulcer patients and even reduced certain gastric cancers.
The parallel is not perfect, but the pattern is familiar: when a possible causal mechanism challenges existing assumptions or interests, the instinct can be to avoid creating the structures that would let us investigate it properly. An ICD code is one such structure. It is not proof of causation on its own, but it is the starting point for systematic observation.
The spectrum of people affected
In practice, the picture is more layered than headlines suggest. One group experienced clear problems in close temporal association with vaccination and have no other ready explanation. They tend to be the most vocal, because they have so often been dismissed or gaslit for years. A larger group developed new symptoms around the same period and now wonder whether there is a connection, especially as they hear similar stories. And there is the biggest group of all: people who simply do not feel right, with fatigue, unusual patterns of illness, or other changes, but who have never been encouraged to consider a possible link to vaccination.
For this last group in particular, I would not clinically leap to telling them their symptoms are vaccine-related without evidence or a way to test for it. That would risk creating anxiety without offering solutions. Yet without the research framework that better coding and tracking could support, we cannot develop those tests or identify the patterns that would let us help them. We stay stuck in anecdote and denial on both sides.
The arguments against the code
Some organisations, including the Alliance for Aging Research, have publicly urged the CDC’s ICD-10 committee not to create a specific code for adverse effects of COVID-19 vaccines. Their stated concerns are that it would skew thinking toward assuming harm, that causation in any individual case is often a diagnosis of exclusion and therefore unreliable, and that general codes for vaccine adverse events already exist and could be used where a link appears clear.
These points are not frivolous. Proving causation in medicine is frequently difficult, and we should be wary of labels that encourage premature conclusions. But if adverse events linked to these particular vaccines are more common or have distinct features compared with other vaccines, folding them into the broadest existing categories risks diluting the signal and slowing the very research that could clarify the picture. A dedicated code does not declare that every coded case was caused by the vaccine; it allows us to count and study them more precisely.
The legal dimension is also openly discussed. Once a specific code exists, it becomes easier to identify cohorts for potential claims, and that reality fuels resistance from various quarters. I understand the institutional anxiety. But avoiding classification out of fear of accountability does not protect patients. It simply leaves them without a recognised pathway to care or investigation.
What we actually need
When I read the comments under discussions of this issue, the division is stark. Some express deep cynicism that anything meaningful will come from what they see as political theatre. Others share personal stories of family members who developed serious illness after vaccination and wonder about connections, while acknowledging that cancers and other conditions existed before the pandemic too. Both reactions point to the same underlying problem: we lack the structured tools to move beyond speculation.
What would genuine progress look like? It would mean treating this as a clinical and scientific question first. A specific ICD code would be one practical step toward better data collection. But the larger requirement is focused research into mechanisms—whether persistent viral proteins, immune dysregulation, or other pathways—and the development of diagnostic approaches that can help individual patients. That work has the potential to benefit not only those affected by these vaccines but also our understanding of other post-infectious or post-vaccination syndromes.
The H. pylori precedent shows what becomes possible once medicine stops resisting the evidence and starts building around it. We gained antibiotics that cure ulcers and prevent complications. Similar clarity here could open treatment avenues we are currently missing.
I keep returning to the patients who have been waiting five years. Many are not asking for political victories. They are asking to be seen clearly enough that medicine can actually help them. An ICD code will not solve everything on its own, but refusing even to create the category keeps us from taking the first necessary step. The science will only move forward when we give it the structures it needs.
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