Five years since the World Health Organization declared COVID-19 a pandemic, millions of Americans are still grappling with the lasting effects of the virus, commonly referred to as long COVID. Estimates suggest around 6% of U.S. adults, or roughly 18 million individuals, are living with the debilitating aftermath of the virus, including symptoms like shortness of breath, brain fog, fatigue, and post-exertional malaise.
The long COVID community continues to seek meaningful recovery and is advocating for increased research funding and treatment options. Despite the passage of time, there are still no approved treatments for long COVID, compelling patients to push for more medical attention to their plight.
Hannah Davis, co-founder of the advocacy group Patient-Led Research Collaborative, voiced concerns about public misconceptions surrounding the condition. She said, "I think that's one of the biggest misconceptions. We've seen so much long COVID in just the last year or two." New patients continuously emerge at doctor's offices, highlighting the persistent nature of the condition and the urgent need for comprehensive medical oversights.
The struggle for effective treatment is exacerbated by the complexity of long COVID, which can span multiple organ systems and vary significantly from patient to patient. Experts assert the importance of adapting symptom management as part of the current healthcare response. Dr. Monica Verduzco-Gutierrez, chair of rehabilitation medicine at UT Health Science Center San Antonio, noted, "It is a lot of symptom management right now. We need significant treatment trials so patients have the possibility of getting a cure."
Currently, the long COVID research arena has made some progress, though many advocates argue it's vastly insufficient. Under the Biden administration, patient advocates successfully lobbied for federal funding initiatives aimed at research focused on the condition. The RECOVER initiative, launched to address long COVID, has provided over $1 billion for such research, with plans for additional funding dedicated to clinical trials.
Dr. Michael Peluso, who leads extensive research on long COVID at the University of California, San Francisco, highlighted the hopes tied to the development of new therapies. "When trials launched... we all sort of expected this is going to be more complicated," he admitted, indicating the unexpected challenges faced by researchers aiming to treat long COVID effectively. Current estimates suggest around 50 drug trials are underway targeting various mechanisms believed to contribute to the illness, up from just about 12 trials counted previously.
Despite these efforts, many patients find it challenging to obtain adequate care as they navigate through the health sector. The advocacy for long COVID treatment has faced political hurdles, especially as the political climate shifts with new leadership. Patient advocates like Meighan Stone, executive director of the Long COVID Campaign, assert, "Regardless of party or political position, long COVID patients have been failed to date by our leaders." Stone emphasizes the necessity of collaboration across ideological aisles to safeguard patient interests and healthcare developments.
The discourse surrounding long COVID has also changed amid governmental shifts. Recent confirmations of key figures, including Secretary of Health and Human Services Robert F. Kennedy Jr. and NIH nominee Dr. Jay Bhattacharya, present both opportunities and challenges for continued advocacy. Earlier public comments from Kennedy to deprioritize research on infectious diseases, including COVID-19, have sparked concerns among the long COVID community. Stone reflects, "Patients should take Secretary Kennedy and take Dr. Bhattacharya at their word, and if the administration doesn't meet the patient community... we will keep calling for action the same way we did under President Biden."
Nonetheless, many within the community express frustration about the normalization of the virus's spread and highlight the overlooked risks of reinfections leading to long COVID. The past years have seen the cancellation of supportive resources, such as the disbanding of the long COVID advisory committee formed under the previous administration. This decision disappointed many researchers and patients who felt the initiative represented significant support for their cause.
Looking forward, the patient community remains determined to heighten awareness and push for treatment avenues. According to Laura Davidson, who leads focused efforts on mobilizing legislative action, the road for long COVID patients is intertwined with broader public health dialogues. "The onus is on us to coordinate our efforts and to assure our voices are heard amid changing political landscapes and priorities," she shared.
With more than $1 billion already committed through federal initiatives, long COVID advocates are striving to maintain momentum by pressing for accountability and progress. The pressing need for novel treatments to emerge is underscored by the daily lives of long COVID patients affected health care outcomes and overall quality of life.
Overall, the condition’s complexity demands urgent attention as the momentum for long COVID patients continues to build. On this five-year commemoration of the pandemic, the stories of those suffering should not be overlooked, as the fight for equity and innovative treatments now emerges as one of the medical community's pressing challenges.