Doing anything more than walking 400 steps in one go results in extreme fatigue that keeps me in bed for days. I’m far from alone in this: Estimates of long Covid prevalence vary, but in general are in the millions globally.
I’m also a scientist. I study interventions, and while my work is in preventing violence against children, we use the same research methods that are used in studying medical interventions.
Research like this is critical, so that money and time are not wasted on treatments that are ineffectual, or worse, harmful. Science makes it possible to know (for instance) that if you have strep throat, an antibiotic will fix it; science also tells us that early treatment reduces your suffering and the likelihood of complications.
This has an economic benefit not only for you, but also for the country at large: You’re likely to be back at work sooner, and not infect your colleagues, so that they too don’t miss work days.
To be certain that an intervention is effective, the gold standard is to conduct a randomised controlled trial (RCT): Take a large number of people, randomly divide them into two groups: The group that gets the intervention, and the group that does not (the control group), and then compare their symptoms after the intervention.
This allows you to be sure that the only difference between the two groups is your intervention. Ideally, one does several RCTs before releasing a treatment, to demonstrate effectiveness in different settings and with different groups.
An RCT is a simple study design, but intervention development is not without ethical complexity. For instance, my colleagues and I debated long and hard about whether we should allow people to use our parenting programmes before we had done several RCTs.
However, ultimately we realised that there were equal but opposite ethical errors: We could wait until we were absolutely sure (several RCTs would have delayed release for a decade or more), but that while we worked on those RCTs children were suffering violence, and there was a good chance (based on theory and on initial RCTs) that our programmes would be effective.
Read more in Daily Maverick: Collusion to exclude Long Covid – the long history of energy-limiting disability denial by insurance firms
In the end we decided that we would release them, but study them as they were used, so that we could pull the plug if we detected any harm. We also made another ethical decision: To release our programme manuals free of charge, so that they could be used even in settings where high costs would prohibit their use, and thus condemn marginalised parents and children to go without the support our programmes could provide.
Recently we set up a not-for-profit organisation to facilitate the use of our programmes by anyone, anywhere, again choosing not to go with a for-profit model that would restrict access.
The field of long Covid studies could learn from the choices we made. I’m focusing here, as examples, on two specific areas that I’ve been following, though the ideas may well apply to others.
There are ways to make diagnostic tests and treatments available relatively fast to the many who need them, without huge paywalls.
First, the trouble with long Covid is the non-specific symptoms. Fatigue, for instance, is a symptom of long Covid, but could be a symptom of anything from anaemia to the Zika virus. The same is true of many of the other symptoms, such as the chest pain, headaches and joint aches. But to treat an illness you need two things: A clear diagnosis and an effective treatment.
I am extremely fortunate to live in Cape Town, and thus to have access to the one diagnostic tool that does seem to identify a symptom specific to long Covid only: The microclots identified by Resia Pretorius and team at Stellenbosch University. Based on this tool, treatment with blood thinners has been of benefit to many (though not yet for me).
This tool, however, has been patented by the university and is currently licensed only via Biocode, a Stellenbosch University tech start-up, to only four doctors in the world (only one in South Africa). Restricting access like this will hardly begin to make a dent in the huge long Covid numbers around the world, and also restricts it to relatively wealthy private patients.
Biocode’s website says that it is dedicated to the “commercialisation of inflammation-centred health screening and diagnostic solutions”, which frankly smacks of profiteering from others’ distress – and if that is true, shame on you, Stellenbosch University. How different it could be if the test were licensed to the National Health Laboratory Service and the major pathology laboratories around the world!
Read more in Daily Maverick: Many people are tired of grappling with long Covid – here are some evidence-based ways to counter it
In terms of treatment, one of the other fairly consistent findings in long Covid patients is autoimmune disease. Berlin Cures, a German company, developed a drug (currently called BC007) to combat a specific autoimmune cause of heart disease.
Those same autoimmune markers have been identified in some long Covid patients, and a small initial study of BC007 in four patients led to complete remission of their symptoms.
The company is currently doing the essential (relatively small) RCT, but to my dismay, their website states that they will do a larger RCT study (called a Phase 3 study) before seeking licensure of the medication. This will massively slow down the release of BC007, yet it is perfectly possible in many countries to apply for licensure of a medication alongside a Phase 3 trial, and I urge Berlin Cures to take this approach. Too many of us need a cure NOW, not in five or 10 years.
Read more in Daily Maverick: It costs R14,000 for a packet of pills to thwart long Covid. Is it worth it?
Science takes time. I know that, and even in my desperation, I appreciate the need for it. It also costs to provide diagnosis and treatment.
But there are ways to make diagnostic tests and treatments available relatively fast to the many who need them, without huge paywalls.
I urge my colleagues studying long Covid to have patient needs at the forefront of their work, alongside the necessary scientific rigour. DM
Since this essay was published, I am delighted to have heard from Biocode that they are working to make this test as accessible and affordable as possible. Currently, apparently, the science is so new that it requires expensive materials and specialised knowledge, but that they are working hard to adapt and standardise the test for a global roll-out. This is very good news!
My goodness! Anyone reading this article without reading the first comment will believe that Stellenbosch University and Dr. Pretorius are nothing but avaricious! It’s Catherine Ward’s comment, above, that makes ALL THE DIFFERENCE to what she’s written.
I’m a patient of the doctor in Stellenbosch who works closely with Dr. Pretorius, and yes, I’m grateful to have the funds to have 8-weekly blood tests, and to be carefully monitored during my treatment. I’ve never known another doctor who asks you to send him a What’s App message every week with an update on how you’re doing – and who replies, briefly but succinctly.
During my first and so far, only appointment with him, he said it was shocking that I should have to travel from Cape Town to Stellenbosch for treatment. In other words, the rest of the medical profession is being a bit slow on the uptake here. He has patients from Canada, Mexico and elsewhere, who cannot get any treatment for this horrible condition in their countries. He made it pretty clear that this treatment should be offered widely, all over the world.
May I make a strong suggestion that Catherine Ward’s article be revised, to include the vitally important information that sits like an orphan in the comment section.
Sandy Park-Ross, as far as I can see, Biocode has only said they are ‘working hard’ to make the test ‘as affordable as possible’. Let’s see what they actually do – more than merely making a statement – before asking Prof Ward to revise her article.
(I do know of someone who was invited to take part in the free trial … and who then received an invoice, which they had to vigorously contend. That’s not necessarily the action of a company wanting to do nothing but good.)