Long COVID Patients Tell Top Officials That CU Anschutz Saved Them

While long COVID remains shrouded in mystery, the ravages of the disease were on clear and painful display when Admiral Rachel Levine, MD, U.S. assistant secretary for health at the Department of Health and Human Services, visited the University of Colorado Anschutz Medical Campus on July 11 to learn about the campus’s research and clinical care, and hear directly from patients.

Carmen Ramirez-Morales and Shellie Tsiopelas were two of three patients on oxygen while sharing their stories. “I’m in constant pain. I can’t walk down the stairs of my house,” said Ramirez-Morales, who has suffered four bouts of COVID-19, including the first in July 2020. She has since struggled with fatigue, pain and lung and cognitive issues.

Said Tsiopelas, “The brain fog, the utter exhaustion are quite overwhelming, and they affect every system in your body and all your relationships.” Both women said the UCHealth Post-COVID Clinic at CU Anschutz, one of the nation’s first clinics dedicated to long COVID patients, has been transformative and even life-saving.

Jane Reusch, MD, professor of endocrinology at the University of Colorado School of Medicine (SOM), speaks to Admiral Rachel Levine during a discussion about long COVID research. Other panelists included Edward Gardner, MD, associate professor of medicine-infectious disease, at left, (SOM), Brent Palmer, PhD, director of flow cytometry (SOM), at right, and Kristine Erlandson, MD, associate professor of medicine-infectious disease (SOM), not pictured.

Levine leads the whole-of-government’s response to long COVID and works closely with the National Institutes of Health on the RECOVER initiative. The effort’s goal is to unravel the mysteries of long COVID – including the underlying drivers of the disease – and get treatments to patients as quickly as possible.

‘Long COVID is real’

“Long COVID is real, but it’s not one thing, and it might not have one cause,” Levine said of the significant public health problem. “We need that basic science and clinical research to understand it, be able to assess it and then to help patients and treat it.”

Levine met with four long COVID patients as well as more than a dozen leading experts from CU Anschutz, including clinicians and researchers affiliated with the Colorado Clinical and Translational Sciences Institute, and other healthcare providers. She also met with campus and CU leadership, including CU President Todd Saliman, CU Anschutz Chancellor Don Elliman, John J. Reilly, Jr., MD, dean of the CU School of Medicine and vice chancellor of health affairs, and Tom Flaig, MD, vice chancellor for research.

State government officials attending included Mirwais Baheej, MD, senior policy advisor for long COVID for the Colorado Lieutenant Governor’s Office, and Rachel Herlihy, MD, MPH, state epidemiologist at the Colorado Department of Public Health & Environment.

SARS-CoV-2 has infected more than 500 million people worldwide, and an estimated 10 to 30% of those infected go on to develop long COVID. According to the Centers for Disease Control and Prevention, COVID “long haulers” are people who experience symptoms beyond four weeks of original infection.

In addition to a constellation of physical symptoms and general anxiety, the patients who met with the admiral have endured job loss, insurance headaches and skepticism about their conditions from providers. One patient, who joined the meeting via Zoom, explained his struggles getting care referrals outside of the VA system.

After being hospitalized with respiratory failure in June 2021, Tsiopelas required prolonged mechanical ventilation and tracheostomy. She will meet with doctors this month to discuss a potential lung transplant.

Tsiopelas said Sarah Jolley, MD, associate professor of pulmonary sciences and critical care at the CU School of Medicine, was the first doctor “who had my back and has ordered the tests that I need – as COVID is a multi-system invader.” Jolley and her medical team launched the UCHealth Post-COVID Clinic, where Jolley is medical director.

Patients grateful for clinic, science

“I’m grateful that there is a clinic (here) and that there is science,” Tsiopelas added. “I honestly believe those programs saved my life. It’s a weird entity, this COVID. But I thank God I survived because I was not expected to.”

Levine said the clinic underscores how CU Anschutz is leading in research and multidisciplinary care for long COVID patients, including mental health. “Your mind and body are connected, and that intersection between physical and mental health is absolutely critical.”

Another reason for visiting healthcare centers around the country, Levine said, is to better educate primary care physicians, nurses and other front-line practitioners about the signs and symptoms of long COVID.

Kristine Erlandson, MD, associate professor of medicine and infectious disease at the CU School of Medicine, told Levine that with collaborations through Denver Health, the Colorado RECOVER study site has been a leader in enrolling diverse populations in the long COVID cohort studies – including members of the Hispanic community and other underserved or rural populations. Colorado has also led in extending telemedicine to COVID-19 patients as well as providing long COVID education through Project ECHO Colorado.

Researchers and clinicians at CU Anschutz are attacking long COVID on multiple fronts – from studying the basic science mechanisms of the SARS-CoV-2 virus and how long the virus remains in the body (post-negative nasal swab) to developing a research definition for long COVID and linking various phenotypes – cardiovascular, pulmonary, neural, etc. – to customized treatments and rehabilitation programs.

‘Impact our country and world’

Ramirez-Morales told Levine she went to several doctors who “didn’t even look at me. They spent their time writing notes and then asked me about my history of depression. They said (my illness) was all in my head.” She said improved education about the disease is essential.

“This is going to be a long haul. This is going to impact our country and the world,” Ramirez-Morales told the admiral. “It’s going to impact our economy, and it’s going to impact our kids; they’re so worn out because they’re going to have to take care of us. So, awareness is something that needs to change.”

Jane Reusch, MD, professor of endocrinology at the CU School of Medicine, said clinicians need to better meet long COVID patients “where they are.” She noted that the upcoming RECOVER efforts will try to address the mechanisms behind the disease. “The strategies have to match the suffering of the individual,” she said. “We can think about mechanism and we can think about symptoms, and we have to continuously be open to try and disentangle them … without judging the patient for their symptoms.”

Because long COVID is a complex problem, Levine said, it requires a multifaceted response. That means researchers, clinicians and innovators coordinating with the wider healthcare system – including insurers, Medicare, Medicaid and other government agencies – to solve the problem.

“It’s not going to be one answer,” she said. “My take-home message is that long COVID is real, we understand that people are suffering, and we’re going to do everything we can through our efforts to help people who are experiencing long COVID in the United States.”