As we mark five years since COVID-19 was declared a pandemic, the plight of long COVID patients remains a critical issue, with millions still grappling with its debilitating effects. New reports suggest that around 18 million adults in the U.S. — approximately 6% of the adult population — continue to suffer from lingering symptoms long after their initial infection.

Long COVID is not merely a relic of the past; fresh cases are still being recorded in healthcare facilities across the nation. Hannah Davis, co-founder of the Patient-Led Research Collaborative, reveals, “The misconception that long COVID is in our rearview mirror is stark. We’ve seen a consistent influx of new patients in the last year.”

Despite ongoing research into the condition, effective treatment remains elusive. Long COVID can affect multiple organ systems, leading to a wide array of symptoms such as debilitating fatigue, shortness of breath, cognitive difficulties, and even cardiac problems. As of now, there are no FDA-approved treatments specifically targeting long COVID, and patients often resort to symptom management rather than definitive care strategies.

In an effort to address this pressing issue, advocates under the Biden administration previously pushed for increased federal funding and prioritization of research towards developing treatments. However, with a new administration potentially altering the course of healthcare policy, the pathway for long COVID research could face hurdles. Meighan Stone, executive director of the Long COVID Campaign, emphasizes the urgent need for bipartisan support, stating, “Long COVID patients have been failed by our leaders, regardless of political affiliation. We cannot afford to wait for years due to ideological disputes.”

Research is Progressing, but Hope Remains Limited

The reality for long COVID sufferers is challenging, as locating knowledgeable healthcare providers can be a struggle. Dr. Monica Verduzco-Gutierrez, chair of rehabilitation medicine at UT Health Science Center San Antonio, mentions, “Currently, we are primarily focusing on the management of symptoms. It highlights the urgent need for significant treatment trials to pave the way for potential cures.”

Despite slow advancements, there are glimmers of hope in the research landscape. In the past year, scientists have made significant strides in understanding long COVID, exploring various factors like blood clotting, exercise effects, evidence of lingering viral presence, and reduced blood flow to the brain.

Currently, there are about 50 drug trials addressing long COVID, a surge from just a few trials a couple of years ago. “We have a range of drugs targeting different mechanisms believed to contribute to long COVID,” explained Dr. Michael Peluso, a researcher at the University of California, San Francisco. “However, the number of trials remains insufficient to explore these options thoroughly.”

Investigating Potential Causes of Long COVID

Numerous theories regarding the origins of long COVID have emerged. Viral persistence, where remnants of the virus linger in the body, has been a focus for some trials employing antiviral medications and monoclonal antibodies. However, other possible mechanisms like immune dysfunction, reactivation of dormant viruses such as herpes, and microbiome disruptions may be equally, if not more, influential.

Excitingly, ongoing trials are assessing various treatment options, including immunomodulators, antiretroviral drugs, and intravenous immunoglobulin (IVIG), among others, with private funding stepping in to support some of these studies.

The federal government, through initiatives like RECOVER, has committed over $1 billion to further long COVID research, highlighting its significance in the national agenda. Approximately half of these resources are intended to back clinical trials spearheaded by the National Institutes of Health.

A Call to Action for Patients and Advocates

As the long COVID community navigates fluctuations in federal health agency leadership and uncertainty in science funding, advocacy remains crucial. “Our immediate goal is to secure ongoing funding for research studies,” Stone asserts. “We need to adapt our strategies in light of new challenges.”

Upcoming figures at the helm of federal agencies, including Secretary of Health and Human Services Robert F. Kennedy Jr. and NIH nominee Dr. Jay Bhattacharya, have voiced their commitment to supporting long COVID research. However, skepticism remains, especially given Kennedy's controversial stance on infectious disease protocols and vaccine rollout.

The struggle against long COVID is far from over. Advocates are resolved to break through barriers as they continue pushing for essential research and treatment developments. Collectively, they hope to someday provide long COVID sufferers with the healing they so desperately seek.