Lara Diem is Senior Physician in Neurology at Inselspital in Bern. The interdisciplinary Long COVID clinic in which Dr. Diem is involved as a neuroimmunologist has already admitted more than 400 people affected by Long COVID. Lara Diem is fully aware of the key concern of sufferers: they want the most effective possible therapies, and they want them as soon as possible. As a researcher at the university hospital, however, Lara Diem also knows that a serious study takes time.
In the interview she talks about the balancing act between the expectations and suffering of those affected on the one hand and the demands of effective research on the other.
Lara Diem, what can you offer in your clinic to people affected by Long COVID?
We’re a specialist clinic, and the people who come to us understandably have high expectations, which we’re unfortunately unable to meet in full. Patients want medication that will heal them. But this is exactly what I currently don’t have. Often, I can’t do much more than offer advice. A great deal is demanded of the sufferers themselves, including acceptance, sacrifice and optimism. This costs them a lot of motivation, patience and energy. But we also see that it’s worth it.
Senior Physician Lara Diem is also a member of Altea’s medical Expert Board. (Image: made available)
Why can’t you “do much more than offer advice”?
There’s no tried and tested causal therapy yet. Some drugs that were developed for other purposes can also aid recovery or relieve symptoms in Long COVID, such as muscle pain, sensory changes, sleep disturbances and so on. This is determined on an individual basis. I’m very cautious about untested experimental approaches, however. I understand that patients who are desperate will grasp any opportunity. I’d probably be exactly the same – but as a physician I can’t justify that.
But what if someone’s been suffering for 15 months and says “I’ve got nothing left to lose.” Why not give something a try?
It would be unethical. I can only prescribe a medicine once I know it’s proven, safe and effective. Otherwise, we’re using patients as guinea pigs, and no one wants that. And, incidentally, there’s always something to lose: there could be severe side effects, complications, life-threatening damage. If we’re not aware of the effect of a medicine or therapy, there’s a great deal of risk involved.
Is everyone else being just as careful? I sometimes hear that other countries are more open to experimenting.
You’re probably referring to products like BC 007 from Germany. The website clinicaltrials.gov, where all trials are registered, still does not list a trial involving BC 007 and Long COVID, though. That research team clearly also needs preparation time for its trials. The Yale vaccination study has also been very quiet in recent months. Good research takes time – wherever you are.
“I don’t promise too much because I don’t want to raise false hopes.”
But isn’t the research scene in Switzerland being a little passive? Are there any clinical trials going on here?
The company GeNeuro, for example, is receiving government funding to investigate a monoclonal antibody called Temelimab that might be able to help with Long COVID. Various other trials are in preparation.
I always tell my patients: “As soon as we have a trial, we’ll let you know.” I think it’s unfair to those affected to announce in advance something that might not come to anything. Raising false hopes would be irresponsible. I’d rather work on the principle of “underpromise and overdeliver”. But preparations for studies are under way, including in Switzerland.
Why do drug trials take so much time?
First of all, it takes an idea, a good hypothesis. And this in turn calls for an understanding of the underlying mechanisms, which in the case of Long COVID are still being studied. Things were more straightforward when it came to vaccination: the genome of the virus was decoded after 10 days, and the target for intervention was clear. But with a new syndrome like Long COVID, the first step is to find the actual targets. With Long COVID, various hypotheses have been proposed. The point after all is to get to the root of the problem and not just fight the symptoms, only to find patients back at square one a few weeks after a supposedly successful treatment.
“In contrast to vaccination, the challenge with Long COVID is to first find out what the good drug targets actually are.”
So, there’s more basic research to be done. And what happens once possible targets have been discovered?
Then you need a substance that blocks or eliminates a specific target. Once this has been found, the next step is to determine whether it’s dangerous or toxic. Animal experiments are used at the beginning to test toxicity.
Then it’s on to a phase I trial. The drug is tested on healthy people to see how well it’s absorbed, how long it stays in the body, whether it gets to the right places, how well it is tolerated, how severe any side effects are, whether it should be administered as a tablet or an injection, and so on. There are many hurdles to overcome. Not to mention the fact that the trial first has to be approved by an ethics committee. This also involves both time and money.
What happens in phases II and III?
In phase II trials, the drug is tested on a small number of patients, maybe 100 or 200. Half of the group receives the drug and the other half a placebo, to find out whether the active ingredient actually has a healing effect.
Once these hurdles are out of the way, it’s time for phase III. The active ingredient is then tested on thousands of subjects worldwide to find out who responds well, what the dosage should be and what the side effects look like. This trial provides the basis for approval by authorities such as Swissmedic. And even then, there’s still the question of whether health insurance providers will cover the costs of the drug.
“I remain optimistic that we’ll see medication for Long COVID on the market.”
A long series of hurdles.
Indeed. Research isn’t a sprint; it’s a marathon. But more like a never-ending one with multiple finish lines.
How do you manage to stay upbeat?
I have two reasons to be optimistic: firstly, I hope that drugs to treat Long COVID will be on the market in the foreseeable future. I also work in the field of multiple sclerosis. At first, we had nothing at all, and then just a few drugs with sometimes relevant side effects. Today, we have 15 different active substances to choose from, with a new one being added every year.
Second, I see the condition of the patients improving even with the current symptom-oriented treatment regimen. After twelve months, 50 percent of patients have almost no complaints, with the symptoms really falling away. A combination of both medication-based and other measures helps in this regard: modern antihistamines are often useful, for example, but it’s also a question of appropriate energy management so that sufferers can learn to respect their new limits. This is the way to achieve good results.
But some suffer for much more than a year, and that’s an extremely long time. And this is why our goal continues to be to intervene earlier, more specifically and more effectively in the future – to enable sufferers to recover quickly and avoid such severe illness with months of absence from work and everyday life.
Bild Header: Symbolbild Adobe Stock
