Individuals with pre-existing disabilities had long COVID and much higher rates than peers, study finds

Researchers from KU's Institute for Health and Disability Policy Studies at the KU Life Span Institute and the Patient-Led Research Collaborative published a study showing that more than 40% of individuals with pre-existing disabilities who had tested positive for COVID-19 experienced long COVID, defined as symptoms lasting three months or longer. This rate is more than twice the 18.9% of individuals without disabilities who contracted COVID and experienced long COVID symptoms.

Research has long documented that individuals with disabilities face barriers to health care access and experience poorer health outcomes than their nondisabled peers. However, many studies during the pandemic have only asked about disabilities present at the time of the survey rather than whether individuals had a disability prior to the start of the pandemic. The research team compared data from the 2022 National Survey on Health and Disability, conducted by the IHDPS, to the Household Pulse Survey conducted by the Centers for Disease Control and Prevention.

"We know many people who experience long COVID go on to develop a disability, but we wanted to know more about how it affected those with disabilities before developing long COVID," said Noelle Kurth, research associate at KU's IHDPS.

The study was conducted by Jean Hall, director of KU's Institute for Health and Disability Policy Studies at the KU Life Span Institute; Noelle Kurth and Kelsey Goddard, research associates at the institute; and Lisa McCorkell, co-founder of Patient-Led Research Collaborative, and was published in the American Journal of Public Health.

The survey examined the types of disabilities self-reported by participants and found that those with chronic illnesses or diseases were the most likely to also experience long COVID, with 60% of those testing positive for COVID developing long COVID. Mental illness/psychiatric disabilities were next at 45%, while sensory disabilities, such as blindness or deafness, had the lowest prevalence of long COVID among types of disability.

"We knew from previous research during the pandemic that people with pre-existing disabilities were having more difficulties getting the vaccines and were more likely to be exposed," Hall said. "So, we knew there were risk factors for COVID-19, but now we also know this demographic is more likely to experience long COVID. They not only have higher rates of long COVID, but they also have greater barriers to care, whether it's transportation, costs or other challenges. That's something we really want people to know."

The findings suggest that public health policy should pay closer attention to the prevalence of long COVID and prioritize the needs of individuals with disabilities to create equitable policies and responses. The authors argue that the risks for long COVID among people with disabilities need to be better understood, as they are more likely to face treatment refusals, develop severe symptoms, be hospitalized or experience long COVID. Further, the public, health care system and policymakers alike should acknowledge that the pandemic is not over and continues to pose greater risks to this already at-risk demographic.

"We read comments from survey participants with pre-existing disabilities who are afraid to go out in their communities because the people they need to interact with, including health providers, aren't masking, and the public in general acts like the pandemic is over," Goddard said, and "re-contracting COVID can exacerbate their long COVID symptoms."

McCorkell, co-founder of the Patient-Led Research Collaborative, and person with long COVID and disability herself, emphasized the need for policies that address current inequities and consider how future pandemics may affect people with disabilities.

"The pandemic is not over, and COVID is still spreading. Policy should be adjusted so that if we're truly aiming for an equitable response, we implement masking in public places and health care facilities to protect people with disabilities," McCorkell said. "With low rates of providers taking precautions and knowing how to support people with disabilities, along with the access challenges anyone faces with long COVID, it's tough out there. Moving forward, we need to focus services and support to people who need them the most."