In the final month of 2020, it appeared that the U.S. government was finally acknowledging the grim reality of long Covid by committing $1.15 billion to the National Institutes of Health (NIH) for research. This did little more than momentarily glimmer as a faint glimmer of hope for the millions directly affected by the persistent condition. Moving forward to February 2023, the Trump administration, in a clearly defined stride to roll back the bureaucratic excess, decided to terminate the Health and Human Services Secretary’s Advisory Committee on Long COVID. This move arrived in stark contrast to the Biden administration’s mediocre engagement with long Covid issues, indicating a full stop to substantial federal involvement in easing the situation of those under the burden of long Covid.
The journey and abrupt halt of this committee, comprising 14 prominent voluntary scientist volunteers, healthcare providers and long Covid advocates, summarize the astonishingly ineffective performance of the federal government in handling the long Covid crisis over the preceding four years. The seriousness of the upcoming long Covid pandemic was anticipated correctly in 2021. New statistics from the Centers for Disease Control and Prevention show that more than 3 million American adults suffer from long Covid, seriously restricting their day-to-day activities, and more than 16 million have experienced the condition.
According to a study by Brookings, long Covid has pushed 2-4 million full-time workers out the labor force. Mainstream media has all too often painted heart-wrenching narratives of how both the biomedical industry and society have indiscriminately turned a blind eye to the plight of these victims, giving rise to widespread disillusionment and despair.
In an attempt to prevent an impending healthcare disaster in April 2022, Biden instructed the HHS to formulate an all-encompassing government response strategy. Almost a year later, the assembly of the committee was finally confirmed. Regrettably, this was over two months post Trump’s election victory and a mere ten days prior to his inauguration. One cannot help but question the inordinate amount of time wasted amidst bureaucracy, even after making allowances for thorough vetting of applicants and the mired systematic roadblocks.
In light of the sluggish execution by the Biden administration, it was apparent that the long-standing, carefully constructed committee on long Covid would not stand a chance. Just six days after its constitution, indeed, the committee was disbanded, thereby debunking the often reiterated commitment to focus on chronic conditions. This was a transparent switch in policy – out with the promises of inclusivity and empathy and in came the rhetoric of purging waste and inefficiency.
The axing of the long Covid committee came hand in hand with the disbanding of several other health equity panels. The attitude towards research investment in long Covid seemed all too familiar. The Biden administration had earmarked over $1.8 billion for long Covid through the RECOVER initiative. Despite the large-sum, researchers and patient advocates criticized it as vastly insufficient.
Adding insult to injury, this funding seems to have evaporated. The Trump administration has hinted towards substantial cuts in the NIH budget. A recent extension on the block against these proposed cuts by a federal judge has done little to dispel the uncertainty surrounding future spending on long Covid research. It appears as though the long Covid ecosystem is on an unavoidable crash course within the current political atmosphere.
Advocacy efforts for patients will likely amount to howls falling on indifferent ears. Fundamental and clinical research will run into roadblocks, and innovative approaches promoting multidisciplinary care will meet with obstruction. Nevertheless, it’s not all doom and gloom. As experienced during the Covid-19 pandemic, states and local health services will continue to step up, innovate, and network.
While federal leadership may seem like a far-fetched daydream, the long Covid community’s fight won’t be easily subdued. They will continue to battle against the odds in the shadow of a disease that remains as ruinous and relentless as the response it has received from the people who lead.