Intersection of long COVID and disability highlighted in CDC study

Just as coronavirus transmission fluctuated in waves, so too have our responses to it. The world is four years from the acute phase of the pandemic, but not without lasting impact—including those who have maintained debilitating symptoms from COVID, adding to a large population of people with disabilities.

This is highlighted in a new, large-scale study conducted by the Centers for Disease Control and Prevention.

The data, released July 16, found that more than one in four adults—over 70 million Americans—reported having a disability in 2022.

The largest study conducted by the CDC to capture the scope of disability in the U.S. and representing 245 million people, the authors found that nearly half of those over 65 reported being disabled, and that long COVID symptoms were present in 11% of those who reported disabilities, versus 7% of those without disabilities.

Researchers are learning more about the mysterious condition of long COVID as the nation moves further away from the acute stages of the pandemic, which has killed an estimated 7 million people worldwide, and 1 million in the U.S. alone. The CDC has calculated that of those who survive, up to 35% qualify as having long COVID, which can be characterized by several symptoms such as brain fog, fatigue, dizziness, weakness, headaches and a rapid heartbeat.

“For the first time, we’re so pleased to be able to present data by disability status on the presence of long COVID at the state level and at the national level,” said Joseph Holbrook, team lead for the CDC’s data and health science team, who worked on the study. “States can use this information to understand the health status of their population with disabilities and to tailor state programs for people with disabilities.”

The data, which has been integrated into an interactive dashboard called the Disability and Health Data System, show that nearly three million Pennsylvania adults reported being disabled, costing the commonwealth $42 billion dollars a year in health care costs.

Cognitive and mobile disabilities were the most frequently reported disabilities in Pennsylvania, at 14% and 11%, respectively, and adults with disabilities in the state were most likely to report also having depression and/or obesity.

Holbrook said the CDC is collaborating with other agencies to gather more data and analyze existing statistics to understand what it might mean.

Local clinics that treat long COVID are reporting a decline in the disease in the “traditional” sense—that is, a healthy young person showing up severely debilitated—but still see lingering impacts of COVID on their patients regularly.

“COVID continues to be a threat to patients’ health and well-being,” said pulmonary physician Briana DiSilvio, associate program director of the pulmonary and critical care fellowships at Allegheny Health Network and co-director of the Center for Autoimmune Lung Disease.

“While we’re not seeing the level of hospitalization and mortality with COVID we saw in 2020 and 2021, it’s still causing morbidity,” she said. “For older patients with lung disease, we have to take acute (COVID) infection seriously.”

DiSilvio said many of her patients have gotten COVID two or three times in the last year, and these infections have exacerbated existing heart and lung conditions. Where patients may have had an inhaler to use as needed before, they’re now reporting they need daily oxygen support or are being put on long-term oxygen.

Karla Yoney, a physician assistant and the senior practice provider for the UPMC Post-COVID Recovery Clinic, agrees that a lot of what she sees is an exacerbation of underlying conditions brought on by a COVID illness.

While Yoney said she’s seen a steady flow of patients coming into the clinic since she started working there in 2021, fewer of them report having been hospitalized due to COVID than when she first started. Patients most commonly report brain fog, fatigue, weakness and pain that impact their ability to complete daily tasks.

“It may not be that any one of those symptoms disrupts their life, it’s the totality of the symptoms that now really impacts how someone goes about their daily activities,” she said.

DiSilvio was not surprised to hear the statistic from the CDC study that nearly half of those over 65 reported being disabled in some way: “The majority of my patients over 65 are struggling,” she said. Yoney echoed that the study’s results were unsurprising based on her experiences in the clinic.

Misinformation around COVID, treatments and vaccination may have contributed to lingering symptoms in her patients, said DiSilvio.

That includes underuse of the antiviral Paxlovid, which has been shown throughout repeated studies to reduce the severity of COVID symptoms and the likelihood of hospitalization and death due to COVID but is not always prescribed within that five-day window.

“There is a drastic underprescription of Paxlovid, and as a result, patients with chronic lung disease who could have been treated are getting sicker,” said DiSilvio.

Lack of funds for high out-of-pocket medication expenses also leads to patients not taking meds that may help them, she noticed.

“There’s a financial burden to being an elderly person in the U.S. right now,” she said. “How do you afford to be on the therapies you need to not be disabled?”

She said she hopes to see increased access to affordable health care—in addition to provider counseling about vaccination and dispelling misinformation each visit.

And at the UPMC clinic, Yoney has seen a variety of rehabilitation therapies improve patient outcomes, like cognitive therapy, neurophysical therapy and occupational therapy for those with chronic fatigue and pain. While for some it takes a year, she does see people get better.

“Just because we don’t know what’s causing something doesn’t mean we can’t find ways to manage symptoms,” said Yoney. “We can still provide relief even if right now we have more questions than answers about long COVID.”

2024 the Pittsburgh Post-Gazette. Distributed by Tribune Content Agency, LLC.