The disease doesn't announce itself early, and the system often fails to go looking.
Somewhere in the United States right now, a person is walking around with a heart condition they don't know they have. Their heart muscle is thicker than it should be, squeezing too hard, sometimes obstructing the flow of blood — and no one has told them. This is the quiet reality of hypertrophic cardiomyopathy, the most commonly inherited heart disease in the country, and the problem that a new three-year partnership between the American Heart Association and biopharmaceutical company Cytokinetics is trying to fix.
HCM, as it's known in clinical shorthand, affects roughly one in every 500 Americans — a number that translates to hundreds of thousands of people. Yet the condition is chronically underdiagnosed. Many patients don't learn they have it until something goes wrong: a fainting episode, a dangerous arrhythmia, or worse. The disease doesn't announce itself early, and the healthcare system, fragmented as it is, often fails to go looking.
The American Heart Association's initiative, announced November 17, 2025, is designed to change that. Cytokinetics, a South San Francisco-based cardiovascular drug company, is stepping in as a financial and strategic supporter of the effort, lending both resources and its existing relationships within the HCM patient and clinical communities to what the Association is calling a system-of-care overhaul.
The initiative has four concrete pillars. First, it will expand the number of hospitals and clinics feeding data into a national HCM registry built on the Association's Get With The Guidelines platform — a tool that lets researchers and clinicians track how patients are actually being managed across the country. Second, it will widen certification pathways for referring centers and the clinicians who work in them, with the goal of reaching communities that currently sit far from any HCM specialist. Third, it will introduce dedicated patient support services at major HCM diagnosis and treatment centers. And fourth — perhaps most ambitiously — it will pilot a detection algorithm specifically designed to catch HCM earlier, before the disease has a chance to do serious damage.
Anjali Owens, a cardiologist who co-chairs the AHA's HCM initiative, put the stakes plainly: the disease is often managed inconsistently, which leads to delayed treatment, higher rates of complications, and deaths that didn't have to happen. The goal isn't just to treat more patients — it's to build a care continuum that actually functions, from the moment a primary care doctor notices something unusual on an EKG to the point where a patient is connected with a specialist who knows what to do.
For Cytokinetics, the partnership is not purely philanthropic. The company has spent more than 25 years working in muscle biology, and HCM sits squarely at the center of its commercial ambitions. Its lead drug candidate, aficamten, is a cardiac myosin inhibitor that completed a pivotal Phase 3 trial — called SEQUOIA-HCM — in patients with obstructive HCM, the form of the disease in which the thickened muscle actively blocks blood flow. The results were positive, and the company is now preparing for potential regulatory approval. Additional trials are underway for both obstructive and non-obstructive forms of the disease.
Robert Blum, Cytokinetics' chief executive, framed the AHA partnership as an extension of the company's broader mission — not just to develop drugs, but to ensure that the patients who need those drugs can actually be found and reached. Too many people with HCM, he said, face a combination of low awareness, late diagnosis, and limited access to the kind of specialty care that could help them. A better-organized system of care is the prerequisite for any treatment to matter.
The tension the initiative is trying to resolve is a familiar one in American medicine: the gap between what the evidence says should happen and what actually happens in exam rooms across the country. Guidelines exist for HCM. Specialists know how to treat it. But that knowledge doesn't automatically flow to the community cardiologist in a rural hospital, or to the patient who has never heard the term hypertrophic cardiomyopathy and wouldn't know to ask.
The three-year timeline gives the initiative room to build infrastructure rather than just awareness. Whether the detection algorithm proves effective in practice, and whether the registry expansion translates into measurably better outcomes, will be the real test. Meanwhile, the regulatory decision on aficamten looms in the background — a potential turning point that could give clinicians a new tool, provided the patients who need it have already been found.
Notable Quotes
HCM is often inconsistently managed, leading to delayed treatment, increased risk of complications, and preventable death.— Dr. Anjali Owens, co-chair of the AHA's HCM initiative
Too many patients living with HCM face a lack of awareness about their condition, delayed diagnoses, and limited access to specialty care.— Robert I. Blum, President and CEO of Cytokinetics
The Hearth Conversation Another angle on the story
Why does a drug company get involved in something like this — building registries, certifying clinics? That's not selling medicine.
It is, eventually. You can't sell a treatment to patients who haven't been diagnosed. Cytokinetics has a drug in the pipeline for this exact disease. A better-organized care system is the market they need to exist.
So is this altruism or strategy?
Probably both, and not necessarily in conflict. The AHA gets funding and a partner with deep HCM expertise. Cytokinetics gets credibility and a more prepared healthcare system. The patients get earlier diagnosis. The interests happen to align.
One in 500 sounds like a lot of people. Why is it so underdiagnosed?
Because it's quiet until it isn't. The heart compensates for a long time. People feel tired, maybe a little short of breath — things they attribute to aging or being out of shape. By the time it becomes undeniable, the disease has often been present for years.
What does the detection algorithm actually do?
The source doesn't spell it out technically, but the idea is to flag patients who fit the profile before they show up in crisis. Probably pattern-matching against existing health data — EKGs, imaging, family history — to surface people who should be looked at more closely.
And the registry — what's the value of tracking all these patients nationally?
It tells you what's actually happening versus what the guidelines say should happen. You find out which communities are being missed, which treatments are being used, where the delays are longest. Without that data, you're guessing.
The co-chair mentioned preventable deaths. How often does HCM actually kill people?
It's one of the leading causes of sudden cardiac death in young people, including athletes. That's part of why it gets attention — it can strike without warning in someone who seemed perfectly healthy.
What happens if aficamten gets approved while this initiative is still running?
Then the infrastructure being built right now becomes immediately useful. You'd have a registry to track how the drug performs in the real world, certified centers ready to prescribe it, and a detection algorithm finding the patients who need it. The timing isn't accidental.