The One Who Asked Questions
Author of the film “Experimenten” Johannes Wahlström: Story of Macchiarini’s patients should not be left hanging in the air
Photo: journalisten.no
The documentary “Experimenten” (Experiments), filmed by Swedish television, caused such a powerful resonance in the society that the ensuing avalanche of dismissals and revelations at the Karolinska Institutet seemed like a refreshing rain. Paolo Macchiarini, the overthrown superstar of thoracic surgery, was found guilty of scientific misconduct and numerous violations regarding his unjustifiably bold experiments on people. After he was expelled from the Karolinska Institutet, Russia became for some time his second home. In the course of this year we witnessed his unexpected moves from city to city, lectures for the youth, attempts to penetrate scientific symposia. In the end, the Kazan Federal University said goodbye to him. You can read about it here , here , here and here . Work on the “creative heritage” of Paolo Macchiarini continues. Several of his articles will be probably retracted from well-known scientific journals. We have to comprehend the lessons of this story, which has already been called ethical Chernobyl in medicine. But at first there was a good portion of investigative journalism. Having met in Moscow with one of the authors of the film “Experimenten”, Johannes Wahlström, I could not miss the opportunity to talk about it.
— Johannes, how did this story start?
— In January 2015, just after the New Year, my editor Johan Bronstad, phoned me. There is a small department on Swedish television, where Johan and I have been doing investigative work for 10 years and making documentary films. Johan said that he received some information. He sent me a couple of links to films about transplantations of bioengineered human organs, which were performed at the Karolinska Institutet. By that time he was in contact with several doctors who worked there. According to them, it turned out that the situation of the patients who received bioengineered trachea might have been not as good as it was presented.
— Was it any specific information?
— No, only assumptions. Doctors had questions on the reports from the articles published by Professor Macchiarini in scientific journals. They saw inconsistencies there. But they had very little information about the patients’ condition. People who were transplanted with these tracheas in the Karolinska clinic, were foreigners. After the operation, almost all of them left Sweden. The only exception was Yesim Cetir – a girl from Turkey, who, after two unsuccessful plastic trachea transplants, spent almost four years at the Karolinska clinic.
— She died recently.
— This is true. But then neither we nor the doctors who we were in contact with knew about the fate of the patients. And I set to work. I began to look through articles and films on this topic. Of course, I watched the movie “Super Cellules!” ( Super Cells! – AA) on the ARTE channel of the German-French public television: not long before it was shown in Sweden. It described meticulously, in detail, the operation that Professor Macciarini conducted in June 2012 on Yulia Tuulik , a young woman from St. Petersburg who had an accident and injured her trachea during artificial lung ventilation. This is a heroic story. Yulia has trouble breathing, it was difficult for her to speak, she was not allowed to swim, or take a shower normally. But then the doctors at the Regional Hospital No. 1 in Krasnodar, where Macchiarini led a project within the governmental Megagrant, put into her a plastic trachea, and it all ends well. The last scene of the film: Yulia is in the car, she is leaving the hospital after the operation. She is happy. He talks about how she will live on, dreams that she will have a big family. I decided to find Yulia. All that I had at that time was her name. In the end, I came across the phone number of her mother, Natalia Tuulik, who lived in a suburb of St. Petersburg. I phoned, introduced myself. Asked if it was possible to contact Yulia. And I heard the answer – Yulia is dead. She died three months before my phone call, in September 2014. Can you imagine my reaction? I just saw her on the screen healthy and happy, full of hope. Five days later we flew to Russia. Part of the conversation with Natalia Tuulik, her version of what happened, is in the film. So a year and a half of work began – we methodically searched for patients who received bioengineered trachea. We still do not know if everyone was found, because there was no single universal list. But it seems to us that we have found almost everyone.
— About some patients of Paolo Macchiarini only very little is known. For example, Sadiq Kanaan, a doctor from Jordan, who received a plastic trachea at the regional hospital in Krasnodar in August 2013. Have you followed his fate?
— We could not find him. Igor Polyakov, deputy chief physician of the regional hospital in Krasnodar, told us that he allegedly drank himself to death. The date of his death is unknown.
— Aren’t there not a lot of patients in this story who drunk themselves to death? Alexander Zozulya, who received a plastic trachea in Krasnodar two days after Yulia Tuulik, also allegedly suffered from this weakness. He died in February 2014 – as it is assured, after crashing a bicycle into a tree …
— The most mysterious figure for us was Claudia Castillo.
— For a long time, she was talked about as Macchiarini’s success.
— The newspapers wrote that Paolo Macchiarini operated her at the Hospital Clinic Barcelona in June 2008, transplanting a bioengineered trachea. About Claudia Castillo there were many different rumours. Different doctors expressed different opinions. We have been looking for her for a very long time. Invested a lot of effort into this matter. Our colleagues were looking for her in Spain, in different places in Latin America. And did not find any traces. Even any evidence of her existence.
— Recently, new evidence began to appear about Macchiarini’s patients. For example, it turned out that the newspaper AiF in Kuban wrote about the operation that Macchiarini performed in 2014 on a 20-year-old Italian man named Luigi . On the site of the patient rights organization CIRCARE, a report by Macchiarini was published, regarding the Megagrant for the first half of 2014. Mentioned there is an operation performed on a 6-month-old child as a stage of preparation for the transplantation of the trachea .
— As for the first patient, it was another operation. We could not get in touch with him, as this was beyond the scope of our investigation. I hope that you or someone else will be able to find him and find out how he is doing. Tell me if you learn something. The second case is completely new to us. Here, too, a serious investigation is needed.
— What happened to the patients you found?
— Shortly after transplantation, a rejection started, and the transplanted organ started to collapse and degrade. This process was described unanimously by the relatives of the deceased patients, and by those who survived. There are now, as far as we know, only two survivors. Zhadyra Iglikova , a resident of Kazakhstan, whom Macchiarini transplanted with a bioengineered trachea together with the Russian surgeon Vladimir Parshin at the Russian Petrovsky Surgery Center in December 2010, is alive not thanks to this operation, but despite of it. Dmitri Odogda, who received a synthetic trachea in June 2014 in the Krasnodar Regional Hospital No. 1, is alive only because this organ was fortunately quickly removed from him. Both he and his parents described to us the same process of rejection and collapse as the rest.
We finished our film about a year ago. After it appeared on Swedish television, many people associated with these experiments in Sweden were dismissed or have resigned, including the rector of the Karolinska Institutet. However, as often happens in such situations, those responsible for this story were, as we say, “crooked up”. The rector now runs the institution that oversees public procurement in healthcare for all Sweden. As a result, the only ones for whom it did not turn out too well were the doctors who initially contacted us. Well, and Paolo Macchiarini no longer works at the Karolinska Institutet.
— It’s hardly worth spending one and a half years of your life to achieve this.
— Of course, we did not have a goal to get someone sacked. We just wanted to tell you what happened to the specific patients. That their testimonies are being heard. To draw some conclusions. Natalia Tuulik, Yulia’s mom, actually agreed to an interview only because she believed that her daughter would have wanted it. She herself was against it, but Yulia, apparently wanted the humanity, or at least the scientific community, to learn something after her death. And we were able to convey her words, which reached us through Natalia Tuulik. Personally, for me as a journalist, the fate of Paolo Macchiarini at some point ceased to be of interest. Much more important is something else. In this story, we saw how hundreds of different people, unconnected in hierarchical order, from different countries, from different areas – from America to Korea, from Russia to Sweden, from journalism to politics and the scientific world – became part of the “conspiracy”.
— They saw that the business was dirty, but remained silent?
— Either they kept silent, or they did not mention it, or they openly lied. But the cumulative result of this “conspiracy” was the death of human beings. Many human beings. How did this become possible? This is the most important question. Here, for example, Elena Kokurina, who wrote the book “Megagrant”, where the events of Krasnodar regional hospital were presented in the most positive way. She was practically Macchiarini’s diary, his personal assistant. The way the book is written, it seems that she had access to a large number of communications, to Macchiarini’s calendar and so on. And to assume she did not know what happened to Zhadyra Iglikova, to Dmitri Onogda …
— About Dmitri we were told for a long time that “communication with him is lost”. Yet all this time he was in Krasnodar.
— Well, let’s assume that she did not know. Although I do not really believe it. In my opinion, in the book some doubts occasionally slip through, which she apparently already had. But she is so attached to Macchiarini, to the fate of the Megagrant, to the fact that the project must be a success, that she – to put it mildly – does not even try to learn about the fate of the patients. And now, of course, questions appear which I would like to ask her, now that we know the fate of patients. Not of one, but of all of them. And she has a direct relationship to that in terms of PR.
We saw many moments of small lies that formed into a big picture. We were present at the presentation of the book “Megagrant”, which Elena arranged the summer before last. Of course, the main character of this event is Paolo Macchiarini. He talks about the fate of the Megagrant: “Imagine when I came to Moscow five years ago, nobody believed me. And there was one person who was the most insolent. He called me a liar. Then I told him: let’s do the first operation together. Now he is in this room. And the patient, whom we have operated together, is still alive. Doctor Parshin, I want to invite you to the podium. You are also a hero of this story, you are a great scientist. Come up here, say a few words”.
And we see – in the course of the 30 seconds, when Professor Parshin rises from the audience and starts walking towards the podium, doubt flashes in his eyes. He can say two things. Either – yes, indeed, she is alive. Or – she is alive not because of the operation, but despite of it. What do you think he chooses? He becomes a hostage of the situation. In the hall, there are politicians, the scientific community, journalists. Will he become a martyr, laying a bomb under his own reputation? There is no big lie, no evil intent. There is no big evil. But from such small moments this evil is born. Someone keeps silent about something, someone is doing something slightly wrong. In principle, everyone understands: what they do little by little, is not good.
— But everyone has an excuse?
— Everyone has. Even Professor Macchiarini. After all, in principle, he cannot influence all these diverse people. Take the film “Super Cellules!”, which pushed me onto this investigation. This is a film by the public television of Germany – the most important, the largest, most respected in Europe. It ends with Yulia being fine, she was given a new trachea. Maybe they did not know something. Could be. In principle, they can be absolved from guilt. But in the process of work we found a letter from the German producer to Yulia. Some time before the première, which was to be held in Germany, the producer invites Yulia to the film screening. And he asks: “How do you feel, by the way?” She writes the answer, which I simply owe you:“Everything is very, very bad for me. More than half a year I spent in Krasnodar in the hospital. Around 30 operations were performed on me under general anaesthesia. Three weeks after the first operation, I had a purulent fistula in my throat. And my throat is still rotting, even now. My weight is 47 kilograms. I can hardly walk. It’s hard to breathe, and now I have no voice. And the stench from me is such that people are recoiling in disgust. The second patient also stinks the same way. The artificial trachea is total crap. Unfortunately, Yulia“
This letter was written about two months before the première. When you read it and you know that the première of “Super Cellules!” did take place, you understand that the question of Paolo Macchiarini himself is not so central as it was thought.
— One more question. Why was your film “Experimenten” not shown in Russia? A significant part of the events which it is about, has happened here, in Russia. For us it is very important. But here almost nobody saw the film …
— Many people think that Russian television does not want to show any revelations. Actually, this is not so. In fact, this is just the stupidity of our channel’s administration, which, like most European channels, is not oriented toward Russia. At our offices, nobody simply bothered to translate the film into Russian, to distribute it on the Russian territory. Instead, they made a version for the English-speaking market. I hope that, maybe with your help, Russian producers will approach the Swedish television. It seems to me that it would be reasonable to put a little pressure on our television bureaucrats.
— Now you are back in Russia and have returned to this story. To be continued?
— Not exactly in the same way. We have started to make a documentary on the same subject for the American television channel Discovery . The audience of this film will be wider. In some ways, this will be a rerun. But the main goal – for me, at least – is that this story does not remain hanging in the air. Time passed, some doctors and officials were fired. But the fate of patients remains their fate. For me, the chance to return back to these people and their relatives is important, so as not to abandon them halfway. This is part of what we want to do.
Secrecy of the investigation
In Sweden, Paolo Macchiarini faces legal prosecution. In Russia, this has not happened yet – although in the Macchiarini list we, Russia, are the number one country by the total of patients who suffered abuse. Although there is evidence that when signing the protocol of trachea transplantation in February 2012, according to which Yulia Tuulik and other Russian patients were operated, Macchiarini knew about the disastrous results of such operations in the Karolinska clinic. He knew, but he hid these facts and misled the ethical committee. This evidence was provided by doctors from the Karolinska clinic. In December 2016, they petitioned the rector of the Karolinska Institutet, the Russian ambassador to Sweden, and the competent Russian authorities: “Several Russian patients were subjected to fatal experiments based on conscious manipulation by regulatory authorities. It is necessary to undertake criminal procedural actions against the responsible parties, so that they are punished in accordance with the Russian law», the doctors wrote. There was no reaction. Recently, the Swedish doctors sent more than two dozen of letters to all competent departments and organizations in Russia. So far, only the Kuban State Medical University answered, saying that it has no ties with Paolo Macchiarini since April 2016, does not know his whereabouts and does not intend to cooperate with him again. It is unlikely that in this way you can put an end to this story. It is necessary to investigate the activities of Paolo Macchiarini in Russia. Indeed, we apparently do not even know the exact number of his Russian patients. I have already appealed to the Russian central health authority Roszdravnadzor, with a request to check the new information published on CIRCARE site.
Translation: Forbetterscience
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