A few years have passed since the height of the COVID-19 pandemic, but but researchers estimate millions of people are still living with the effects of long COVID. The Keystone Symposia on ‘Long COVID and Other Post-Acute Infection Syndromes’ will kick off this Sunday in Santa Fe, bringing in researchers from across the world to discuss issues like diagnostic procedures and clinical trial design.
Long COVID has been defined as a chronic illness that can persist for at least 3 months but could last for years after an initial COVID infection. For some it has resulted in disability that can be neurological, cardiovascular, and circulatory systems.
Dr. Daniel Altmann oversees a lab at the Imperial College of London, but is also one of the organizers for the conference. He said we are nowhere near the stage where patients can go to a clinic and easily be diagnosed and given medication in order to return to their baseline health.
“We don’t have consensus, we don’t have treatment guidelines, and most of those 400 million people in the world don’t feel like they are getting the treatment they need,” said Altmann.
He added Long COVID has presented a spectrum of disabilities, leading to enormous consequences with world health systems spending an extra $2 trillion a year in treatment costs.
The conference begins Sunday with sessions from researchers going through Tuesday.
According to Johns Hopkins Medicine, 400 million people are living with the condition. Dr. Altmann shared where long COVID research is now and his hopes going into the conference.
DR. DANIEL ALTMANN: There's almost no two patients in the world on the same care pathway getting the same treatment, and most are getting nothing at all and are simply desperate. And just as the kind of predictor at sort of crystal ball gazing, if you look at the people after SARS, you know SARS1 in 2003-2004 who got long SARS, 20 years later, most of those are not better at all and haven't gone back to their normal jobs. You know, they're not recovered. So, the stakes are very high. So, you know, kind of every man for himself, depending on how good a doctor you can get hold of.
KUNM: When we started hearing about long COVID, the number of people projected to suffer from the disease was high. Where are those numbers now? Are they better or worse than researchers originally thought?
ALTMANN: It’s complicated to describe. So you know, when I talk about, if you consider the curve of everybody who's ever had COVID, including those very severe cases in the first year or 18 months of the Wuhan strain, before most people were vaccinated, when we have got a lot of our really severe long-haulers from, maybe a third to half of those have gradually got better and resumed their normal lives. So that's true, the numbers could be falling, not growing, but actually it's kind of plateaued or maybe growing slightly.
And that's because in the current period, if you look around you, in the current age we live in of Omicron co-variants, even in vaccinated, immune people, you know, everybody knows, in their workplace, there are people who are still going down with COVID even whether they test or not. There are some people who are getting four or five or six COVID infections per year, and although your risk of getting long COVID is reduced today compared to what it would have been in 2021 when none of us were immune and there was a much more severe virus around, it's still about 2.5% of all cases.
KUNM: The patient community in long COVID has been a big part of advocacy and research for the disease. So how are you all at this conference prioritizing those with that lived experience?
ALTMANN: It's absolutely stage center for long COVID research and for this conference. So for example, we have an organizing committee of four people, and one of them is a very well-known patient activist, Hannah Davis, and she'll be speaking at the meeting, and many other patients will be speaking at the meeting. It's more so than almost any other disease I've ever worked on, where you know, the trend in modern medicine, if you always have trying to have patient partnerships and listen to them and involve them in the research. But I have never been involved in a field where it's so stage center as it could be. You know, they sort of created the medical field.
KUNM: It seems like there's still groundwork that's ongoing, but I do want to look at the future a bit. Are there any treatments or interventions for long COVID that are on your radar?
ALTMANN: There are hundreds of clinical trials in the world at this moment. And one of the things you could say very simply, which hadn't really paid off that well yet, but probably will in the end, is if we think that one of the reasons that many people have long COVID is the idea that maybe they never quite cleared the virus, and they've got virus hanging around in their body, driving the disease, for example, in their gut.
Surely, if we gave them the right antiviral drugs or the right monoclonal antibodies, some or all of those would get better. We kind of have faith in that idea, and yet, none of the trials yet have been big enough or powerful enough to prove it one way or the other.
KUNM: And considering the impact of long COVID, it will continue to be a challenge, what are your hopes for this particular conference next week?
ALTMANN: We really want this to be a milestone and a turning point when we really get the biggest names in the field together. You know, Keystone meetings aren't just your average medical conference. They really are meant to be transformative. One of the phrases that are often abused and overused in this context is knocking people's heads together. And I think we want this to be the meeting where all those random opinions get forced to sit together in a room and really work out what we're going to do for people and how we're going to get it organized, and how we're going to get big enough clinical trials so that, you know, in a year or two years time, we don't still need to be having the same conversations. So we really hope that Santa Fe is going to change all that.
