As many as 1 in 10 Coloradans may have been hit by long COVID, a report says

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John Daley/CPR News
Long COVID patient Alex Trebino and physical therapist Dan Stoot at High Definition Physical Therapy in Englewood. Some of her therapy involves tracing images on a wall using a laser on a headlamp and others in her hands.

State officials have released their first estimate of how many people in Colorado have been hit by long COVID-19. The figure is staggering: Data suggest that between 230,000 and 650,000 Coloradans may have been affected.

With a state population of nearly 6 million, the data suggest as many as one in 10 Coloradans have experienced long COVID, according to the report from The Office of Saving People Money on Healthcare in the Lt. Governor's Office. And many of them have struggled to find treatments and answers about what can be a life-altering illness. 

People with post-COVID conditions can have a wide range of symptoms, including fatigue, brain fog and headaches, according to the Centers for Disease Control and Prevention. Those may be prolonged, lasting weeks, months, or even years after infection. 

Some patients described their challenges in a January segment on CPR’s Colorado Matters.

“I think that's what's so unclear about long COVID and potentially concerning about those numbers is that we certainly know some people recover,” but most haven’t, said Dr. Sarah Jolley, a researcher with CU Anshutz. Jolley is also the medical director of the UCHealth Post-COVID Clinic, one site of a national study looking at recovery after COVID. 

Jolley said only 30 to 40 percent of long COVID patients have returned to their individual health baseline so far, based on what she’s observed and seen in research. 

“There are a number of folks where symptoms persist much longer and so it's hard to estimate what proportion of that 600,000 will have longer-term symptoms versus shorter-term long COVID symptoms,” she said. “I would say the minority of individuals that we've seen have had complete recovery.”

The implications of that are enormous, Jolley said, both in terms of so-called long-haulers’ quality of life as well as Colorado’s workforce, education, health care and other systems.

Jolley said the best protection and prevention against long COVID is getting fully vaccinated, including the latest booster. “We know that vaccination lessens the risk of long COVID, lessens the severity of initial disease,” she said, noting the lagging number of people getting the omicron booster in Colorado. Currently, only about a quarter of eligible people in the state have received the omicron booster, according to the state’s vaccine dashboard, far below the uptake for the initial series of vaccines. 

The report includes testimonials from Coloradans that provide a window into what its authors described as the “immense human costs” of the illness:

Chelsey B., 49

“I went from being a fit, active, successful and financially secure professional in the prime of life to a broken — and broke — person,” Chelsey reported. “COVID kills some people outright; many of us with long COVID are dying, too —just very slowly and painfully.”

Melissa, 54

“Four months after my initial symptoms in March 2020, my heart still raced even though I was resting,” Melissa reported. “I could not stay in the sun for long periods; it zapped all of my energy. I had gastrointestinal problems, brain fog, extreme fatigue, ringing in my ears and chest pain.”

Melissa said her condition improved but reported that she was still feeling symptoms nearly three years after her initial COVID infection. 

Amanda, 35

Amanda reported testing positive for the coronavirus in November 2020. “COVID has wrecked the person I thought I was before. I now have been forced to go back to full time work against my cardiologist recommendations,” she said.

“This was in fear of losing my job I’ve had for 7 years! I am 35 years old and have heart problems I’ve never had before,” including a racing heart rate that becomes elevated from a laying down position to standing. “I am newly engaged and scared to think about having children due to what COVID has done to my body. I am 100 percent a different person after COVID."

The report also notes there’s a significant overlap between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome. One resident named Jane described suffering from that condition.

“The illness severely limits my participation in my grandchildren’s lives, and my own daily life. I can only be vertical for one to one and a half hours at a time, and then I have to rest for an extended period,” she said. “I miss out on so much, and activities of daily living such as housekeeping, exercising, and socializing are severely limited.”

The long COVID report is the first such annual summary authored by The Office of Saving People Money on Healthcare for the governor and lawmakers. 

The state aims to develop baseline data and monitor the effects of COVID-19 on Colorado’s economy, workforce, medical and long-term care needs, health care affordability and educational attainment.

The report notes the illness is uncharted territory, both for medicine and government policy. It recommends better data collection and disease surveillance, collaboration between various institutions and improved care access for patients facing challenges at home, work or school.

Another data point about the impact of long COVID comes from insurance claims. The Center for Improving Value in Health Care provided the state with a dataset of claims from a database of state insurance carriers, including Medicaid and Medicare.

It found around 16,000 Coloradans had gotten a long COVID diagnosis between Oct. 1, 2021, and Aug. 31, 2022. The report’s authors said that was likely an undercount based on several factors.

The office has also hired a senior policy advisor on long COVID, Dr. Mirwais Baheej, who was unavailable for an interview.

“As far as we know, there are no other states undertaking similar work at this time although the White House has published two reports on long COVID,” said Lt. Gov. Dianne Primavera in an introductory letter to lawmakers and the governor. “We do hope to partner with the federal government as we move forward.”