One of long-haulers’ clearest demands has yet to be reflected on national or international data dashboards. Namely that the tsunami of COVID-induced disability is acknowledged in pandemic policymaking, not just in scientific grants, papers and clinics. “There is a strange disconnect whereby health ministers are now talking about the gravity of long COVID, but it features nowhere in the considerations on which they base their pandemic policy,” says Nisreen Alwan, a public-health specialist at the University of Southampton, UK, who is herself recovering from long COVID.

And many long-haulers have found common cause with clinically vulnerable people in calling out the ableism and disablism (see go.nature.com/336rjwc) of policies that fail to keep COVID-19 case numbers low. Rampant spread not only raises the risk of more troublesome variants evolving, it also sets more people up for long-term health problems — especially those who are already marginalized — and it limits the lives of millions for whom vaccines are unavailable or ineffective.

Public health has always privileged the acute over the chronic, but this is about more than discounting the future. It’s about duelling models of disability — the medical and the social. When will it be safe for the adult with severe asthma to return to in-person work? How is the thriving child with an organ transplant to get educated if there’s no vaccine for her, no masks or tests for her classmates, no notifying her parents when there’s a case in class, and public messaging that runaway infection among children is fine?