The missing constituency in healthcare

Thirty years of patient advocacy has built something extraordinary. Here is what it is still missing.

The people leading Families USA, One Nation Overcharged, Patients Over Profits, Healthcare Now, Docfluencers, Protect Our Care, Break Up Big Medicine, the Committee to Protect Health Care, and the dozens of other organizations fighting for patients in this country are doing work that matters.

They are not naive. They are not ineffective. They are not the problem. The system they are fighting is the problem, and over the last three decades, they have won real victories through persistence, coalition building and relentless public education.

I am not here to tell them they are doing it wrong. Rather, I am here to suggest that despite those victories, we are all still missing the same piece.

I am a 30-year brain cancer survivor. I founded Stupid Cancer in 2007 because the community I needed did not exist. I did not come out of Washington. Everything I know about American healthcare has come from living inside it, not studying it from a think tank or a committee room. That does not make me a policy expert. It makes me a patient, and that turns out to be the one credential nobody has ever treated as the organizing principle.

Every major organization working on behalf of patients has built its strategy around one of two approaches. One is moral witness, in which the idea is to document the harm, elevate the stories and trust that a sufficiently informed public will demand change. The other is policy advocacy. This means drafting legislation, build coalitions, negotiating compromises and defending every inch of progress that can be won. Both have produced real victories, and both have watched them narrowed, delayed or absorbed by a system that adapts faster than reform does.

A July 2026 Families USA poll found that 94 percent of Americans believe Congress should take action on healthcare costs. That is not an awareness problem. If nearly the entire country agrees the system is failing them and structural change still proves elusive, the missing ingredient is probably not another awareness campaign.

Most organizations organize people around a diagnosis, a disease, a benefit, or a policy priority. Cancer patients advocate for cancer research. Rare disease communities fight for treatments. Families defend Medicaid. Seniors protect Medicare. Every one of those missions is legitimate. But each one arrives separately while the industries shaping healthcare arrive together.

What nobody has seriously attempted at national scale is organizing people around the one identity they already all share: patient. Not cancer patient or Parkinson’s patient, but patient. So many patients have fought insurance denials, waited weeks for prior authorization, helped aging parents navigate Medicare or otherwise tried to make sense of a system that too often treats human beings as administrative transactions.

That community is not unified by diagnosis. It is unified by experience.

An estimated 18.6 million Americans were living with a history of cancer as of January 2025, according to the National Cancer Institute, a number projected to reach 26 million by 2040 . Add the chronically ill, caregivers, the uninsured and underinsured, and families navigating Medicaid, Medicare Advantage, and marketplace plans. What emerges is one of the largest untapped constituencies in the country.

A movement never needs most people. It needs a committed minority organized around a shared identity, with enough discipline and consistency to show up every time it matters. The patient constituency does not need to persuade the healthy and the fortunate that the system is broken. It needs to find the people the system has already broken and tell them that their anger is not just a valid personal grievance. It is political capital.

Patients have always had the numbers. What they have never had is a shared identity. Nobody has asked them to recognize themselves as a constituency.

That sounds philosophical. It is entirely practical. A cause mobilizes people around an issue and responds after harm has occurred. A constituency understands its own leverage and works to prevent the harm before it happens.

Over 30 years, patient advocacy has built extraordinary infrastructure. The expertise exists. The relationships exist. The public trust exists. What has never been built is the connective tissue that helps a cancer survivor in Phoenix, a caregiver in Pittsburgh, and a retiree opening a Medicare premium notice in Tampa recognize that they are not fighting separate battles. They are living different chapters of the same story.

I did not come out of Washington. I am marching into it — not because patient advocacy needs another organization or campaign, but because it needs someone asking patients to think of themselves not as members of disease communities, but as members of one civic constituency.

That missing constituency does not need to be invented. It needs to be named. It needs to hear, clearly and repeatedly, that its shared experience is more than a personal hardship. It is a civic identity. It is a political and economic identity, not a partisan identity. Political in the most fundamental sense of the word: People who share common interests and have the collective ability to protect them.

Organizations in this fight must not change course. Rather, they must add one tool to what they have already built. The next chapter of patient advocacy may not be about persuading Americans that the healthcare system is broken, but about persuading patients that they have been a constituency all along.

Matthew Zachary survived brain cancer at 21. He is the author of We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare (Wiley), founder of Stupid Cancer, and CEO and co-founder of We the Patients.