A new investigative report out Tuesday finds that long covid patients are traveling overseas to try out costly and untested treatments for their symptoms, including having their blood filtered. But at least some experts are worried about the trend, cautioning that these treatments have no strong evidence supporting their claimed benefits.
The report is a joint collaboration between The BMJ and ITV News. The authors visited or interviewed patients who went to clinics in Cyprus, Germany, and Switzerland hoping to find help for their lingering post-covid symptoms. These symptoms tend to include, but aren’t limited to, persistent fatigue, breathing problems, and cognitive dysfunction, or brain fog.
The primary treatment offered by these clinics is called apheresis. Patients have their blood drawn out, which is then “washed” and split into its different components of plasma and red blood cells. The blood is then recombined and finally given back to patients via a different vein. The treatment supposedly works to alleviate one of the proposed causes of long covid: damaging microclots that form following infection.
Other treatments provided at these clinics include anti-clotting drugs, intravenous drips of vitamin supplementation, and hyperbaric oxygen therapy. Doctors and patients interviewed by the authors say these interventions can cost thousands of dollars. Some patients do report an improvement in their symptoms afterward. But at least one patient experienced no change at all after having spent over $50,000 USD on her treatment, the report describes.
There is some early evidence suggesting that microclots could be linked to long covid. There are also doctors and patients within the long covid community who claim that apheresis can be an effective treatment for these clots or the damage they cause. But microclots aren’t the only proposed theory of how long covid happens, and it’s likely that other mechanisms, such as persistent infection, could be important contributors as well. Beyond that, there’s simply no strong data showing that apheresis would even help those with microclots, outside of anecdotal accounts. It’s possible, for instance, that microclots are merely a biomarker of the dysfunction caused by other factors and that trying to eliminate them wouldn’t actually treat people’s underlying disease.
There are researchers now running small trials of apheresis with their long covid patients. But as a general rule, medical ethicists condemn the practice of performing experimental treatments on patients outside of the context of a clinical trial. Oftentimes, unscrupulous clinics and doctors will prey on people with chronic illness by selling treatments at an exorbitant cost—a trend that many experts have been warning could become commonplace in long covid circles as well.
“It’s unsurprising that people who were previously highly functioning, who are now debilitated, can’t work, can’t financially support themselves, would seek treatments elsewhere,” Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and a researcher on the Therapies for Long Covid in Non-hospitalised patients (TLC) trial, told The BMJ/ITV News. “It’s a completely rational response to a situation like this. But people could potentially go bankrupt accessing these treatments, for which there is limited to no evidence of effectiveness.”
While there are several trials for long covid treatment underway or set to be conducted in the near future, patient advocates have argued that not nearly enough resources have been devoted to helping people with these symptoms. And so long as these patients are left out in the cold, there will undoubtedly be people looking to take advantage of their desperation.