Helping patients who continue to have symptoms following a bout of COVID-19 is complex and a new bill from Sen. Tim Kaine could help equip doctors on the frontline with more information and resources.
A host of UVa Medical Center leaders and physicians were on hand Friday morning to share their insights with Kaine, who recently introduced a bill to improve research on the syndrome known as long COVID and provide more resources for people experiencing its impacts.
Kaine, who had COVID-19 at the start of the pandemic, said he had mild symptoms — “like a blizzard of allergic reactions all at once” — but still experiences constant nerve tingling. He’s been vocal about his symptoms in order to shed light on what other people are going through. Those who have what’s now considered long COVID have said the long-term consequences of the virus weren’t taken seriously at first.
Kaine’s CARE for Long COVID Act would create a central database to gather long COVID patient experiences, expand research into the disease to better improve the health care system’s responses as well as improve patient and physician education.
The bill also would provide for better coordination among different government agencies in order to educate employers and schools on the impact of long COVID and develop partnerships so that people with long COVID can access other services such as legal assistance or social workers.
“The Biden administration has said that long COVID could be a disability, but recognizing that is the beginning,” Kaine said.
He’s also working on a bill regarding pandemic preparedness.
On Friday, in a board room at the medical center, the UVa physicians said figuring out how to fund the complicated and interdisciplinary care needed for long COVID patients was essential along with determining eligibility for the care and providing a range of resources for those affected. One doctor worried that people who never took a COVID test but have long COVID might not be able to access to the needed care.
“The traditional service centers that we’ve had in place for many years don’t always work and that suggests to me that there’s a lot of research that needs to be done,” said Dr. K. Craig Kent, the CEO of UVa Health.
Kent supports the long COVID bill.
UVa has established a clinic to care for patients who are recovering from COVID-19; however, there’s no insurance structure that makes it fundable for the physicians, said Dr. Kyle Enfield, director of intensive care at the medical center.
“This ends up being a labor of love because we’re very interested in doing that,” Enfield said.
Enfield added that about half of the patients at the post COVID clinic come from disadvantaged communities and are at risk for complications
“I’m glad that your bill will support social work and other ways to support those patients who don’t have the resources that maybe the rest of us do to seek some of the care that we need because those patients really struggle just to come to the clinic to be seen,” he told Kaine.
Anywhere from 5% to 25% of those who had COVID-19 could develop some degree of post COVID symptoms. That would be about 450,000 people in Virginia, said Dr. Alexandra Kadl, pulmonologist at the medical center.
“What you see is really just the tip of the iceberg,” Kadl said.
At the clinic, Kadl said they are seeing patients with insomnia, depression or PTSD.
“Things that need a lot of attention and a lot of care that currently are really hard to provide,” she said. “So that’s where we really lagged behind and where we really could emphasize and strengthen the system.”
What exactly long COVID looks like in a particular patient can vary. Typical approaches for rehab or physical therapy don’t seem to work as well for this group. Helping those patients will require a paradigm shift in medicine, said Dr. Talia Pollok, a physical therapist for the medical center.
“We have to educate our physician colleagues and then our entire profession that they are going to have to think very differently about how to treat these patients,” Pollok said.
Donna Broshek directs the Neurocognitive Assessment Lab at UVa and said long COVID patients need advocates. She shared the story of a woman who was forced to go back to work before she was ready — a return that didn’t go well for the woman.
“You can’t have somebody who’s tired and exhausted and has cognitive issues advocate for themselves,” Broshek said.
Kaine, at the end of the discussion, said there’s a lot more to do and learn regarding long COVID.
“We don’t have all the answers yet, but we are devoting significant research to it,” he said. “By really focusing on long COVID, we’ll learn some answers that will help people who have had other long-term consequences from different viruses. So if we all share our experiences and learn from one another, we’re going to not just help people who have long COVID, we’re going to help other people too.”