This is a MedPage Today story.
As frustration grows among long-COVID patients over the lack of available treatment options, some of them are travelling to Cyprus, Germany and Switzerland to undergo experimental “blood washing”, according to a recent investigation by The BMJ and ITV News.
Over the past year, people with the often debilitating disease have been flocking to private clinics to undergo apheresis, a blood-filtering treatment usually used on patients with lipid disorders that also involves giving them anticoagulants, based on the hypothesis that “the symptoms of long Covid are caused by small blood clots blocking the flow of oxygen through the capillaries,” wrote Madlen Davies, investigative editor at the BMJ.
While doctors in most European countries can offer patients experimental treatments or off-label drugs if they expect to benefit from them, explain the risks and obtain consent, one such apheresis clinic, the Long Covid Center in Cyprus, requires patients to waive their right to sue the clinic as part of their consent process, Davies noted.
In addition, many feared that desperate patients would shell out large sums of money for treatments that were both invasive and unproven, she added.
“It’s not surprising that people who were previously highly functioning, who are now debilitated, unable to work and unable to support themselves financially, are looking for treatments elsewhere. It’s a completely rational response to a situation like this,” Shamil Haroon of the University of Birmingham in England, who studies long Covid, told The BMJ. “But people could potentially go bankrupt affording these treatments, for which there is little to no evidence of effectiveness.”
To prepare the blood, a needle is inserted into the patient’s vein.
Umarazak/Shutterstock / umarazak
Haroon said the kind of experimental treatments that long-term COVID patients are seeking in private clinics that offer apheresis and anticoagulant drugs should only be done as part of a clinical trial.
However, Dr. Beate Jaeger, who has treated thousands of long-Covid patients with apheresis at her clinic in Mülheim, Germany, told the BMJ that the trials would take too long for these seriously ill patients.
In addition to the experimental nature of the treatment and its potential costs, some experts have raised concerns about the lack of follow-up care for patients after they leave these clinics, Davies said.
Anticoagulation should be administered by doctors who follow patients regularly, Amitava Banerjee, a cardiologist in London and long-term COVID researcher, told The BMJ. Bleeding could be as mild as a bruise or nosebleed, but it could also be serious, such as a brain hemorrhage.
“I am concerned that this has been pushed in a vulnerable group,” she said.
Davies described a patient, Gitte Boumeester, a trainee psychiatrist in Almelo, the Netherlands, who contracted COVID-19 in November 2020 and soon after began experiencing extreme fatigue, difficulty concentrating, heart palpitations, shortness of breath and chest pain. Boumeester underwent several tests, but doctors could not find anything wrong. She eventually quit her job the following November after two failed attempts to return to work.
After joining a Facebook group for long-Covid patients, Boumeester learned about the Long-Covid Center in Cyprus, which offers a special form of apheresis – heparin-induced extracorporeal LDL precipitation, or HELP apheresis. This involves filtering out unwanted lipids and proteins from the blood. This process reduces the “stickiness” of the blood and improves microcirculation, according to the center.
Boumeester decided to travel to Cyprus after reading testimonials and research results on the center’s website and the Apheresis Association’s Facebook page. The association has nearly 5,000 members and promotes apheresis for long Covid. The posts stated: “Over 80 percent of patients report that their successes are permanent” and “There are no known risks.”
Boumeester was treated there in March and traveled once or twice a week to the Long Covid Center as well as the neighboring Poseidonia clinic for additional treatments such as hyperbaric oxygen and vitamin infusions. Two months later, Boumeester returned home after spending the equivalent of about $18,000 without any improvement in her symptoms.
A person’s blood is processed while connected to an apheresis machine.
Jonathan Brady/PA Images via Getty Images, FILE
Both the Long Covid Center and the Apheresis Association are led by Markus Klotz, an Austrian businessman who dedicated himself to these efforts after contracting Long Covid himself, Davies wrote.
Klotz told the BMJ: “We as a clinic do not advertise or promote this,” adding: “We accept patients who have problems with microcirculation and wish to be treated with HELP apheresis… If a patient requires a prescription, this is assessed individually by our doctor or the patient is referred to other specialists if necessary.”
A spokesperson for the Poseidonia Clinic told the BMJ that all treatments offered “are always based on a medical and clinical assessment by our doctors and clinical nutritionists, as well as a diagnosis via blood tests followed by laboratory tests in accordance with good medical practice.”
