Long COVID was listed as the cause of death on more than 3,500 death certificates since the start of the pandemic, according to a new analysis from the Centers for Disease Control and Prevention (CDC) released this week.
Experts have cautioned that quantifying deaths from the condition is difficult and have said that the CDC estimates are almost certainly an undercount. What is clear are the growing calls for more attention to be paid to the crisis. Per the CDC’s own data, millions of Americans remain disabled due to long COVID.
More payers are beginning to pay attention to the condition and how it evolves, with some experts suggesting they form advisory panels that include patients with long COVID. Meanwhile, health systems and hospitals are opening specialized centers focused on treating the condition.
Yale New Haven Children’s Hospital launched its children’s post-COVID comprehensive care program last summer, with services being offered at its pediatric specialty center. The program’s goal was to give families access to a network of pediatric experts in infectious disease, pulmonology, cardiology, rheumatology and neurology in one visit.
The program was developed as a direct response to the needs of the community and after the hospital heard from parents and pediatricians.
“What we did was looked back and identified what were some of the key symptoms or ailments that some of these children were complaining of,” Rebecca Ciaburri, director of quality, safety and clinical program development at the hospital, told Fierce Healthcare. “With the new omicron variant, children were far more affected in this year than in the prior two years.”
Thus far, the hospital has seen 411 pediatric positive cases this year, compared to 162 in 2021. But amid the "tripledemic," the program has remained stable in terms of cases thanks to vaccinations and milder variants.
"We have seen such significant volume with RSV and flu lately in both our inpatient areas and ED, but COVID rates have remained stable," Ciaburri said.
The program is also being supplemented by telehealth for children that can continue the program that way. Some get referred to rehab programs, according to Ciaburri. For high-acuity patients, most come in once or every other month to manage symptoms.
Ironing out the logistics was a major hurdle for program leaders. Since the program needed to provide multispecialty services in one visit, making sure that the logistics were designed for the most efficient care delivery was key—especially since it was pulling from existing provider staff and schedules.
The program, the hospital hopes, will help prepare it for the next public health emergency when it might need to quickly put together a similar program.
Parallel efforts around long COVID are picking up in the private sector. Health tech startup Love launched earlier this year hoping to democratize what products are studied in clinical trials. Its plan is to focus on the health effects of natural products and to collect data on their potential. Run by the former CEO of digital checkout software company Bolt, Ryan Breslow, the company raised $7.5 million in August.
The company is currently relying on a community-funding mechanism by way of blockchain technology. Love plans to sell digital tokens to fund clinical trials, with each token giving its owner a vote on which product to study. More tokens mean more say. The idea is to help people fund what they care about and want data on. Apart from potentially conducting its own studies, the company may partner with trial leaders to explore scientifically undiscovered areas.
“We’re very open-minded to solutions,” Brian Moriarty, vice president of strategy, told Fierce Healthcare.
Love wants to focus on chronic, neglected illnesses like chronic pain and gut issues—and long COVID. The startup hopes to join several players in the space that are connecting patient communities to drive change—like the Long COVID Research Initiative, which aims to spur progress in research on the condition.
In the coming months, Love will roll out to the long COVID community. Each community is identified by criteria, like an opportunity to bring people together or an existing unmet medical need. Patients are really pushing for solutions to long COVID, Moriarty noted, and Love hopes to harness that energy and provide the infrastructure to help drive action.
As it considers partners, Love is working with scientific advisers, at least one of whom has done research on long COVID. “We want to be clever and thoughtful about how we do things here so that we really move the needle,” Love’s chief medical officer Kevin Horgan told Fierce Healthcare.
Despite a period of rapid innovation during the pandemic, Horgan explained, the idea of building solutions out from the patient population being affected and being a “nexus for collaboration” is a “distinctive angle.”
Once Love builds out its patient community, it hopes to transition from a top-down to a bottom-up model.
“The hope and the goal is to really work with our communities to address the solutions that those communities are finding a need for,” Moriarty said.
Editor's note: This story was updated to reflect that the Yale program launched last year, not this year.