HHS issues report focusing on patient experiences with Long COVID

Nov. 22, 2022

A new report released by the U.S. Department of Health and Human Services (HHS) highlights patients’ experience of Long COVID to better understand its complexities and drive creative responses by government leaders, clinicians, patient advocates and others.

Long COVID is a set of conditions. Researchers have cataloged more than 50 conditions linked to Long COVID that impact nearly every organ system. Estimates vary, but research suggests that between 5 percent and 30 percent of those who had COVID-19 may have Long COVID symptoms, and roughly one million people are out of the workforce at any given time due to Long COVID. This figure equates to approximately $50 billion annually in lost salaries.

The Health+ Long COVID Report builds on the President’s Memorandum on Addressing the Long-Term Effects of COVID-⁠19 and the two previously issued HHS Long COVID reports. The report was commissioned by HHS and produced by Coforma, an independent third-party design and research agency. It provides recommendations on how to deliver high-quality care, and relevant and intentional resources and supports to individuals and families impacted by Long COVID.

Last week, the Administration sent a $750 million-dollar supplemental funding request to Congress to support Long COVID research and treatment. This funding request would support HHS and their continued work on Long COVID, providers who serve patients with Long COVID and its associated conditions, and community-based organizations that assist with case management and provide other essential services and supports. By developing a wrap-around response this funding will assist in answering the report’s call to action.

“Listening to and learning from the experiences of Long COVID patients is essential to accelerating understanding and breakthroughs,” said Adm Rachel Levine, M.D., Assistant Secretary for Health. “The Health+ Long COVID Report is evidence of our commitment to engaging communities to provide patient-led solutions.”

Combining more than 1,000 hours of interviews, workshops, and human-centered design research with the public, this report puts patients at the center of government innovation and gives direct insight into our nation’s most pressing health issues. Human-centered design uniquely positions people as active participants in their own research. It treats patients as experts in their own life challenges and integrates their perspectives into the social, public health, and economic solutions created to support the Long COVID community.

“Long COVID isn’t one condition,” said Rear Adm Michael Iademarco, M.D., M.P.H., Deputy Assistant Secretary for Science and Medicine. “The Health+ Long COVID Report allows us to hear directly from patients so we can better understand the complexities of this multisystemic condition and enrich our understanding and response to Long COVID and its associated conditions.”

The Health+ Long COVID Report compliments the existing landscape of Long COVID scientific literature with the narratives and expertise of caregivers, frontline workers, and people experiencing Long COVID and its associated conditions.

The report offers a variety of short-term and longer-term recommendations that come directly from the patient experience. For example, healthcare providers should develop and share materials about Long COVID to educate patients and their loved ones. Insurance providers should update plan guidelines that align coverage with medical treatments that improve health outcomes for people with Long COVID. Educators and employers should support accommodations for people living with Long COVID that allow them to continue to work and study. Federal agencies should disseminate Long COVID messaging to let people know Long COVID is real and is a serious public health issue.

HHS release