“It’s great that we’re starting to see funding for research, but long-haulers need to be able to survive and make it to see the answers from that research. ... These people are losing their homes, they’re losing their cars, they’re rationing medications. They’re not going to doctors because they can’t afford the copays.”
and person with Long COVID
This report also describes an ideal treatment journey or set of steps for seeking care. However, most, if not all, people we spoke to with Long COVID struggle to access the care they need. Through interviews and journey mapping activities with people with Long COVID, we identified pain points and barriers each step of the way that make accessing care a sometimes insurmountable battle. In addition to some of the social determinants listed already, these barriers include lack of knowledge about Long COVID amongst health care providers, anti-patient bias, poor care coordination, and testing that is insufficient to detect abnormalities.
Lastly, research takeaways and recommendations are organized into an opportunities framework, as seen on the right, for advancing equitable change across public, health care, assistance, and innovation ecosystems. These recommendations are intended to holistically support people with Long COVID by enlisting change from a range of audiences, including health care providers, assistance providers, educators, employers, researchers, advocacy organizations, and the general public.
With between five and 30% of people developing Long COVID after a COVID-19 infection,3 this report is a call to act with urgency to design and implement solutions for people with Long COVID. While we may not yet have the science to understand why Long COVID happens, we can act now to create what people with Long COVID want and need to improve their health and live a higher quality of life.