Anthony Fauci long covid

Exclusive: America’s top disease expert speaks to the Guardian about the dangers of long Covid and urges US Congress to avoid complacency

by in Washington

Dr Anthony Fauci, America’s top infectious disease expert, has warned against prematurely declaring victory over the pandemic, not only due to short-term needs but because long Covid represents an “insidious” public health emergency for millions of people.

In an interview with the Guardian, Fauci urged US Congress to avoid complacency and resume funding to combat the virus as well as long Covid, a chronic and prolonged illness that continues to elude scientists and healthcare providers.

“It’s a very insidious beneath-the-radar-screen public health emergency,” Fauci said via Zoom. “It isn’t that you have people who are hospitalized or dying, but their function is being considerably impaired. For reasons that are obvious, that doesn’t attract as much attention as a death rate.”

The cold fact that Covid-19 still kills 400 people a day in the US catches public attention more acutely than estimates of the millions suffering from long Covid, Fauci added. “People say, well, what does that mean? It’s not very concrete. And yet for the individual patient, it could be debilitating.”

The World Health Organization believes that between 10% and 20% of Covid-19 survivors have been left with lasting symptoms including breathlessness, fatigue and cognitive dysfunction that can persist long after the acute infection has resolved.

Between 7.5 million and 23 million Americans are estimated to have developed long Covid. More than 1 million people could be out of the workforce at any given time, resulting in a loss of more than $50bn in income.

There is no test for long Covid – its precise causes remain mysterious and little is known about how it interacts with other medical and physical conditions. This poses particular challenges for scientists, public health providers and politicians seeking to engage an American public eager to move on.

“One of the unfortunate, challenging and frustrating parts about it is that there are so many elements of it that don’t fit into a known or recognizable pathogenic process,” Fauci said. If a person is severely fatigued and unable to work, for example, there is no laboratory test, X-ray, CT scan or MRI that points to something and says: “There’s inflammation here and that’s the reason for the fatigue.”

Fauci continued: “We don’t know what the mechanisms of brain fog are. How come someone who is very sharp intellectually and very energetic all of a sudden can’t concentrate for more than half an hour on anything? And how come people who are polished athletes no longer have any exercise tolerance?”

‘There are more unanswered questions than there are answered questions’ – Dr Anthony Fauci

He added: “These are all mysteries that we hope will unfold and uncover sometime in the reasonably near future, but there are more unanswered questions than there are answered questions. You don’t really know what to do about something until you know what the lesion is, and we don’t know what the lesion is yet. That’s the problem.”

In this context, trying to treat or cure long Covid “becomes a crapshoot”, Fauci admitted, because “we don’t even know what the target of the treatment is – and that’s swimming in the dark”.

Science is trying to light the way. Researchers are working to identify particular biological factors, or biomarkers, that correlate with symptoms of the condition and might be detectable in blood tests. Such markers might include molecules produced by the immune system or evidence of inflammation.

Last year the National Institutes of Health (NIH) – where Fauci is director of the National Institute of Allergy and Infectious Diseases until he steps down in December – launched a $1.15bn initiative to advance understanding of and the ability to predict, treat and prevent long Covid. The Centers for Disease Control and Prevention (CDC) is also carrying out a major study.

What is becoming clear is that some groups are more vulnerable than others: elderly people (Fauci, 81, became infected with Covid in June and worried that he might suffer long Covid but was spared) and anyone whose Covid case was severe (though mild to moderate cases can also lead to the condition).

Fauci added: The other interesting thing is that it also is more prominent in people who have underlying psychological issues: depression and things like that. The one thing you don’t want to fall into the trap of saying is well, it’s all psychological, because it’s not, it’s real.”

Less predictably, several studies indicate that long Covid is more common among women than men. Noting that diseases such as lupus have a similar gender bias, Fauci speculates that some of aspect of dysregulation of the immune system is more common in women than in men.

“That’s a pure theory: I have no evidence that this is the case. But as an immunologist I’m thinking, why is it women? And then I start thinking of diseases that women have in greater proportion than men, and a lot of them cluster around immune dysregulation.”

Early in the pandemic, the view that viruses don’t discriminate was quickly eviscerated by daily reminders that societies do. A recent CDC survey found that 38% of Black people, 37% of Hispanic or Latino people and 20% of white people with long Covid also reported significant limitations on their activities.

People of color are overrepresented as bus drivers, cleaners, grocery store employees, warehouse staff and other essential workers who typically have less flexible hours, less geographical mobility and less access to deal with America’s notoriously patchy and costly healthcare system.

Fauci remarked: “When you look at those who seek care, or who have easy access to care, there is definitely a disparity between brown and Black people and white women.

“When you look at diabetes, obesity, hypertension, social determinants of health are the things that allow for that disparity. There’s no reason to believe that the causes and the underlying reasons for the disparity are going to be any different when you’re dealing with the recognition of long Covid.”

Does that mean there is need for government outreach to minorities? “I’ve been saying that about Covid in general. You look at the incidence of severity of disease, hospitalization and death – it clearly weighs more heavily towards minority populations because they don’t have early, easy access to care compared to the rest of the population.”

The social safety net could be crucial for disadvantaged communities. Long Covid is categorised as a disability, but the government’s social security disability benefits are generally paid to people who can demonstrate they are unable to work for a year or more. In the case of long Covid, that could be hard to prove.

‘The non-specificity and the vagueness of this is its own worst enemy’- Dr Anthony Fauci

Fauci said: “The non-specificity and the vagueness of this is its own worst enemy because you can’t pin down what’s wrong or it takes a while to document how long it lasts. If one of the conditions for disability is that you have to have a condition last for a year, what is the parameter that you’re going to use to indicate that it’s lasted a year? If there’s no lab test, if it’s only subjective feeling – ‘well, I’ve been incapacitatingly fatigued for a year’ – how do you prove that?”

In April, Joe Biden announced efforts to raise awareness of long Covid as a potential cause of disability as part of a national research action plan to detect, prevent and treat long Covid and improve access to care – especially for communities disproportionately affected by the pandemic.

But the political climate for interventions is tough. After two and a half years of lockdowns, restrictions and acrimony, the masks are coming off as Americans go back to a more normal life. Covid-19 has dropped down the news agenda like a stone, and last month the president himself declared: “The pandemic is over.”

Having ploughed vast sums of money into fighting the pandemic, Congress turned down the White House’s March request for an additional $22.5bn to meet testing, equipment and vaccine needs. Ashish Jha, the White House’s Covid-19 response coordinator, told reporters last week: “Congressional inaction has put the health and wellbeing of American people at risk.”

Fauci is grateful for Congress’s past generosity, and believes that US is leading the world on fighting long Covid, but urges Washington to resist any sense of mission accomplished. “We’ve hit a wall when it comes to further resources for Covid, including long Covid. There doesn’t appear to be a lot of resources that are waiting for us right now.

“I hope that changes. If you declare victory, you’re declaring an imaginary victory because we haven’t won the battle yet.”