Searching for antibodies

Volunteers from Russia’s coronavirus vaccine trials are conducting their own studies of its effectiveness

On August 11, Russia announced the registration of the world’s first coronavirus vaccine, dubbed “Sputnik V.” That said, studies of its effectiveness are not yet complete: there are more than 40,000 volunteers taking part in the ongoing Phase III clinical trials, 75 percent of whom received the vaccine while the rest were given a placebo. Official data on the study has yet to be released, but some of the volunteers are already sharing their experiences and test results in a Telegram chat group created specially for this purpose. This information is serving as the basis for “amateur studies” of the vaccine; determining its side effects, monitoring antibody levels, and figuring out who got the placebo and who was given the actual shot. To find out more, Meduza talks to the chat group’s creator, Vladimir Rusetsky — a programmer from Omsk who volunteered for Russia’s coronavirus vaccine trial together with his wife.

This is a summary of correspondent Alexandra Sivtsova’s conversation with Vladimir Rusetsky. You can read the full Q&A in Russian here.

Asked why he and wife opted to volunteer for the Sputnik V clinical trials, Vladimir Rusetsky says that while other people are suspicious of the new coronavirus vaccine, they did their research and concluded that getting the shot was the safer bet. “The consequences of the coronavirus are much more dangerous than the possible risk from any of the registered vaccines. We’d rather encounter the covid spikes in the vaccine than covid itself,” he tells Meduza. “Plus, our example can convince doubters.”

Going into the trial, however, Rusetsky and his wife had a hard time getting their questions answered. So they established the chat group on Telegram as an informal discussion forum for the trial’s volunteers. “My wife and I live in Omsk and when we signed up for a vaccination in Moscow we had basic questions: how long will it take? Two hours, two days, or two weeks? There were no answers,” he recalls. “I looked for a place where people participating in the trial could talk but didn’t find one. [As a result], we made a group to discuss basic things and share side effects [of the vaccine] with each other.”

Rusetsky is adamant that they never meant for the chat group to act as a replacement for official information coming from the researchers running the vaccine trial. And he objects to the notion that they’re actually conducting research at all. “Anyone can provide information: a vaccine developer, unofficial channels. It’s often contradictory. And the more [of our] own information we have, the easier it is for us to filter out fakes,” he says. “What our group is doing can hardly be called research. Participants are sharing their [antibody test] results obtained personally at different laboratories.”

The Telegram group has drawn 800 members so far. According to Rusetsky, the majority are volunteers taking part in the Phase III clinical trials for Sputnik V — but there’s only about 150 active users who have definitely been vaccinated. “Many just read, but don’t write,” he says.

Asked if he has any concerns about the information being shared in the chat compromising the official double-blind study, Rusetsky says the members of the group asked this question themselves and reached a general consensus that sharing information couldn’t do any harm. “As far as I know, vaccine test subjects in other countries are also establishing similar channels, communicating, exchanging experiences. This is not uncommon,” he maintains. “We decided for ourselves that we aren’t interfering with the main research. In theory, a person shouldn’t know if they have the placebo or not. But a participant can go get tested, receive the result, and find this out. It’s not prohibited. And if the organizers didn’t prohibit it, then it’s not harmful.”

As Rusetsky explains, the contract the volunteers signed doesn’t include any restrictions on getting tested for coronavirus antibodies or sharing information. And the information available in the group can actually help the volunteers from jumping to false conclusions: “People get vaccinated and, for example, three weeks later go to a regular clinic to get tested. The result shows the absence of antibodies. They come to our group and say ‘I have the placebo.’ And the first thing they read in our group is that the standard test in a clinic […] does not show antibodies after vaccination.” Members of the chat group will then point the volunteers to a laboratory that will perform the right tests.

As it turns out, mistakenly believing that they’ve received the placebo is the most common reason people join the Telegram group. “Eighty percent of the people who come to our chat say that according to tests from clinics they have the placebo. And we tell them to go get the right tests. As a result, the statistics are approximately the same as in the study,” Rusetsky continues. “Around a quarter receive the placebo — the rest, the vaccine. The antibodies are clearly visible, there are average values.”

So far, the members of the chat group have mainly focused on accumulating data and presenting it in an accessible manner. “One of the volunteers works in data science professionally. He gathers all the results in a table, builds charts, and visualizes the data,” Rusetsky explains. “The charts turned out to be of high quality and are in demand outside of our chat. They’re simple, understandable, and answer the question ‘What will happen if I get the vaccine?’ most accurately [...] The data we publish, we [publish] for each other. There’s no aim to collect statistics in order to contrast with the official ones.”

Rusetsky says that the vaccine developers from the Gamaleya Institute haven’t attempted to contact him. And the researchers haven’t commented publicly on the “amateur studies” of the vaccine as of yet.

A Meduza source close to the group of scientists working on Sputnik V said that the unofficial research going on in the Telegram chat has no influence on the official results of the clinical trials. The source noted that since it is a double-blind study, participants can get tested for coronavirus antibodies after getting vaccinated and conclude based on the test results that they received the real vaccine, but this doesn’t rule out the possibility that the individual in question received the placebo and actually developed antibodies due to a mild case of COVID-19. As such, unofficial research cannot be considered relevant or significant in the context of the official trial, the source maintained.

At the same time, Meduza’s source noted that the volunteers in the Telegram group appear to have organized their study competently and quickly figured out which system to use to test for antibodies.

Recently, the developers behind Sputnik V announced that the vaccine is showing 92 percent effectiveness. As it turns out, the information collected in the group appears to be consistent with these claims — according to Rusetsky, at least: “As far as I know, not a single person from our group who knows for sure that they had the vaccine has been infected. In our [group] there are even doctors who aren’t participants in the clinical trials but received the vaccinations as medical personnel. They are working in the ‘red zone’ daily, taking PCR tests, and none of them have gotten infected either.”

That said, the volunteers will only find out the official results of the study 180 days later.

Interview by Alexandra Sivtsova

Summary by Eilish Hart