thisworld INVESTIGATIONS Last Hope Clinic Tx Date: 17th November 2005 This script was made from audio tape – any inaccuracies are due to voices being unclear or inaudible 10.00.00 Music 10.00.06 Narrator Stefano Tricarico is dying of a paralysing illness. Now he’s making the journey to a clinic that he thinks might save him. 10.00.15 Music 10.00.18 Stefano Tricarico Voice over I want to make myself useful to the world and to myself. When you are too attached to life, you never want to leave it. 10.00.25 Music 10.00.29 Narrator This man says his clinic holds the key to keeping Stefano and possibly millions like him, alive. 10.00.35 Music 10.00.39 Professor Smikodub Voice over I am proud to be the first person in the world to record the many effects of embryonic stem cells. 10.00.45 Music 10.00.48 Professor Smikodub Voice over I often feel I’m the executor of God’s will. 10.00.52 Narrator But to some he’s a charlatan, preying on patients who’ve no other hope. 10.00.57 Music 10.01.00 Dr Filippo Buccella Voice over We don’t understand how these stem cells are being used and there have been no publications of studies explaining how his methods work. 10.01.06 Music 10.01.08 Title Page LAST HOPE CLINIC 10.01.14 Music 10.01.23 Narrator The clinic’s work has its roots in events that took place here in Ukraine nearly twenty years ago. 10.01.29 Music 10.01.36 Narrator In nineteen eighty-six the nuclear reactor at Chernobyl exploded, spreading radioactive dust across the region. It created a massive long-term health problem. 10.01.46 Music 10.01.49 Narrator In the Kiev region alone, nearly a million people still suffer its effects with conditions ranging from diabetes to blood anaemia and cancer. 10.01.57 Music 10.01.59 Narrator It forced the state to fund new research into repairing tissue and blood cells. 10.02.03 Music 10.02.07 Narrator And in Ukraine one man, Professor Alexander Smikodub, was already at the forefront of this work. He soon found an effect that would become key. 10.02.18 Music 10.02.24 Aston Prof ALEXANDER SMIKODUB Director, EmCell Clinic Voice over It became clear that problems of muscle and cell wasting did not occur if embryonic cells were at work, for example if you make a cut in a new-born rat or its embryo. These were my first observations. 10.02.48 Professor Smikodub Voice over We soon we realised the power of embryonic stem cells. 10.02.52 Music 10.02.58 Professor Smikodub Subtitle This is our clinic. 10.03.05 Narrator This sealed container holds samples of what makes the professor’s treatment work; stem cells from aborted foetuses, frozen in liquid nitrogen. 10.03.14 Music 10.03.17 Narrator Stem cells act as the factory of our entire body. They can reproduce themselves by dividing and multiplying into identical cells, giving them the potential to form any type of tissue. 10.03.31 Aston Dr HUSEYIN MEHMET Imperial College London Stem cells offer the possibility of repairing every tissue in the body and so it would seem to me at least, if you let your imagination run wild for a few seconds, that stem cell therapy has the potential to cure all diseases where the problem is at the cellular level. So, for example, in a stroke patient where a part of the brain has been damaged, one can imagine a situation where you can inject cells to merely repair and to replenish the tissue that's gone. 10.04.02 Dr Huseyin Mehmet I think that stem cell biology and stem cell therapy will simply and purely revolutionise medicine. 10.04.13 Narrator To most of the world this revolution is still many years away but because of the need for research after Chernobyl, Professor Smikodub has been able to use stem cells on patients since the early nineties. 10.04.29 Professor Smikodub Voice over We are lucky in Ukraine. In nineteen ninety-one the Health Ministry approved a document which allowed clinical work with embryonic stem cells, though they did it without knowing exactly what they were doing. 10.04.46 Professor Smikodub Voice over So while everywhere else they were only thinking about research, we were already working with it in practice. 10.04.57 Narrator Smikodub, a professor at Ukraine’s Medical University, bases his private clinic, called EmCell, in one of Kiev’s biggest hospitals. 10.05.07 Narrator It’s one of the few allowed to perform organ and cell transplants. And it’s here that Stefano will come for treatment. 10.05.15 Music 10.05.19 Professor Smikodub Subtitles So this is a kind of stem cell bank. It’s here that we preserve the material of patients treated at the clinic. 10.05.31 Narrator Most stem cells used in research in the West are taken from either adults or clinically created embryos less than a few days old. But the professor’s clinic uses material from foetuses aborted at between three and eight weeks. 10.05.46 Music 10.05.49 Narrator There are broadly three different types of stem cells extracted from the foetus, coloured according to their group. One colour is given for stem cells which will develop into skin, brain and hair, one for blood, bone, and muscle tissue and another for stem cells for internal organs, like the liver or pancreas. 10.06.07 Music 10.06.09 Narrator These are kept frozen in what’s called a single-cell suspension. It’s tested before being transplanted into each patient. 10.06.16 Music 10.06.18 Narrator But to create these requires a lot of foetal material. 10.06.25 Professor Smikodub Voice over It is the will of God; if you can help a living person through the use of dead, aborted material, you have to do this. In the United States in a single year there are six hundred thousand children suffering from Muscular Dystrophy, yet out of the dead foetal material which could be used to treat them only nought point nought one percent is ever used. All the rest is either burned in ovens or flushed down the toilet. 10.06.57 Narrator Smikodub’s EmCell clinic receives about three hundred patients a year, paying up to ten thousand pounds for each stem cell treatment. 10.07.06 Narrator Some like eleven year old Yana who has anaemia, are local, referred here by their own doctor. 10.07.14 Narrator Others have come from abroad, like Laurence Finestone, a British multiple sclerosis sufferer from Guildford. He began stem cell treatment after coming off his NHS-prescribed drugs. 10.07.25 Aston LAURENCE FINESTONE He’s knows what he’s talking about. I’m very pleased to be treated by him because I’m very happy with the way he looks after me. he can see a difference in my entire kind of well, way I’m behaving and the way I’m acting, the way I’m speaking because one of the biggest things that you don’t see, you see, is the way you feel and I can tell you now that you feel much better. 10.07.48 Narrator The patients here seem convinced that Smikodub’s treatment is helping them. 10.07.55 Narrator Five years ago Angelo Mauri was a wealthy city financier. 10.08.00 Narrator Now he’s almost completely paralysed by Amyotrophic Lateral Sclerosis or ALS, a form of Motor Neurone Disease. He depends on full-time nursing and is unable to speak. 10.08.14 Narrator With tiny hand movements and a head-controlled cursor, he used his laptop to talk about what he calls ‘the real scientific future’. 10.08.24 Angelo Mauri Voice over I am proactive and confident that I can win my personal war. After five years of ALS I should be dead but now I can see light at the end of the tunnel. 10.08.33 Music 10.08.35 Narrator The clinic had once thought Signor Mauri too ill to treat. Now they want to show how stem cells are helping him. 10.08.41 Music 10.08.48 Translator Look how he can move his legs. This was completely impossible before the treatment. 10.08.59 Narrator The professor says these movements are evidence of the cells’ ability to actually restore muscle in the limbs. 10.09.05 Music 10.09.09 Translator In the regular medical practice and in routine therapy you never observe the results like this. So in the world it’s the first example, never happened before. 10.09.25 Professor Smikodub It’s a surprise for us. 10.09.26 Music 10.09.34 Narrator News of the work being done by EmCell and Professor Smikodub has spread among those with incurable conditions like muscular dystrophy and MS. Using the internet he’s by-passed Western medical journals and any independent review of his work. 10.09.51 Music 10.10.01 Narrator Two years ago, word of his work reached Termoli on Italy’s Adriatic Coast, with dramatic consequences for one young man’s life. 10.10.09 Music 10.10.14 Narrator For Stefano Tricarico every movement has become a challenge. Each week he has physiotherapy for his condition; Duchenne’s Muscular Dystrophy or DMD. 10.10.26 Narrator It’s a genetic disease which means Stefano lacks a protein called dystrophine, needed for his muscles to work and grow. Without it, they slowly waste away, leaving him virtually paralysed at just twenty years old. 10.10.41 Music 10.10.44 Narrator It was only diagnosed when he was six. His mother decided then not to tell him the truth; that death comes to most sufferers in their mid-twenties. 10.10.53 Music 10.10.56 Aston GRAZIA TRICARICO Voice over Stefano asked; ‘Mummy, why are you crying? And because he was six years old, he was little, I replied; ‘because I have a headache and I’m crying’. From that day I promised myself that I would not cry again, never in front of him so as not to make him suffer. Stefano must grow up like any other normal child, he must laugh. I must do everything so that he won’t suffer. 10.11.23 Singing 10.11.28 Narrator By the age of nine, Stefano was having enormous difficulty walking. Soon after these pictures were taken at his First Holy Communion, his legs simply gave up. 10.11.40 Singing 10.11.47 Aston STEFANO TRICARICO Voice over It was on that day when I sat down, which was the day of my Holy Communion. The next day or two days later, when I tried to get up, I did it but I was sweating a lot and really I only just managed it. So I just sat down and, even straining myself, I never got up again. 10.12.08 Music 10.12.11 Narrator As he grew older, Stefano was still ignorant of the truth of his condition. Specialists spoke only of his body’s slow deterioration. 10.12.19 Music 10.12.21 Narrator He became dependent on a motorised wheelchair as his arm and leg muscles wasted away. Then he was contacted by an uncle in Germany, who had been given an internet address. 10.12.32 Music 10.12.33 Narrator It belonged to EmCell; the website of Professor Smikodub. 10.12.37 Music 10.12.40 Narrator But in order to convince him to research it, the uncle told Stefano what his mother had not; that his disease was fatal. 10.12.51 Stefano Tricarico Voice over In the beginning I didn’t want to believe it because everyone tries to avoid these things. But I think I got over it, thanks really to EmCell, thanks to the clinic we found because it turned on a light that I thought I’d never find again. 10.13.12 Narrator To raise the money to go the family began a campaign on local television. 10.13.18 Italian reporter Subtitles This is Stefano Tricarico. He needs the support and help of each of you – of all our television viewers. Isn’t that right, Stefano? Stefano Tricarico Subtitle Yes it’s true. 10.13.28 Narrator The town raised enough money to allow the family to travel to the EmCell clinic in Kiev; their first ever trip abroad. 10.13.35 Music 10.13.41 Narrator Professor Smikodub’s treatment seemed to have a positive effect on Stefano’s condition. One specialist wrote that it might even have stabilised. 10.13.57 Grazia Tricarico Voice over The Professor told him he had to start using a knife and fork because he could already do that movement and now he uses a fork. Now he can write where before he couldn’t. Not very fast but he can write. 10.14.13 Music 10.14.17 Narrator But Stefano’s television campaign had also alerted muscular dystrophy groups in Italy. 10.14.22 Music 10.14.24 Narrator The director of one began checking EmCell’s website to find out more about the treatment. Even though his own son had muscular dystrophy, he was unimpressed. 10.14.38 Aston Dr FILIPPO BUCCELLA Parent Project, Italy Voice over I was fairly sceptical, first of all because of the way things were put, which was very different from the usual kind of scientific language. Secondly because of the lack of informative detail, which is what you need in order to understand exactly what takes place at this clinic and finally because there was a complete absence of any objective confirmation of their statements. 10.15.02 Dr Filippo Buccella Voice over We don’t understand how these stem cells are being used and there have been no publications of studies explaining how his methods work. I’m afraid it’s impossible for me to say for certain that they’re doing anything worthwhile. 10.15.17 Music 10.15.21 Narrator The money for Stefano’s campaign in Termoli began to drop away after Signor Buccella wrote to local fund-raisers, warning them about EmCell. 10.15.29 Music 10.15.31 Narrator The family insisted the clinic’s treatment was still helping. 10.15.34 Music 10.15.37 Stefano Tricarico Voice over The decisive factor is my breathing. The doctors were on the point of wanting me to use a ventilator at night and now all I know is I don’t have to use one. 10.15.46 Singing 10.15.55 Stefano Tricarico Voice over Also when I used to sing before, I couldn’t, my voice was always the same, now you can hear the difference when I go higher or go lower. 10.16.05 Singing 10.16.20 Dr Filippo Buccella Voice over These young people are often under the illusion that they can be cured and that is very, very seriously damaging because when they finally realise there is no treatment which will help them, that their condition will never improve, the damage this causes them, the depression it causes, is terrible. 10.16.37 Music 10.16.42 Narrator The family still had enough money for Stefano to go to Kiev this summer, perhaps for the last time. 10.16.48 Music 10.16.51 Narrator They’ve set off to meet the Professor for their first appointment. 10.16.54 Music 10.16.58 Narrator The emergency hospital seems grim. Its facilities worn and basic. 10.17.03 Music 10.17.13 Narrator After the long, dark corridors the EmCell clinic seems almost futuristic; a private outpost in a state institution. 10.17.25 Narrator There, waiting for them, is Professor Smikodub. 10.17.31 Stefano Tricarico Voice over He greets you as if you’re a member of his family. He also knows how to put your mind at rest, because he has an amusing face and he’s a bit tubby, so he makes you laugh, in a nice way. 10.17.46 Professor Smikodub Subtitle Say loudly, “I am in Kiev”. 10.17.53 Stefano Tricarico Subtitle I am in Kiev. 10.17.58 Aston Prof ALEXANDER SMIKODUB Director EmCell Clinic Voice over Stefano came to us when he was eighteen, when total dystrophy had already developed, which is one step short of dying. His condition has now been stabilised. 10.18.12 Professor Smikodub Subtitles I’m satisfied with you, Stefano. You’re in pretty good shape. After treatment, your stools will be back to normal. You’ll go to the toilet every day. 10.18.23 Music 10.18.27 Narrator Then, it’s time for Stefano’s transfusion. The stem cells selected for him are taken from a six week-old foetus. 10.18.34 Music 10.18.36 Narrator They’re injected into a drip of saline solution flowing into Stefano’s arm. It’s the first of three treatments he’ll be given over the next few days. 10.18.46 Music 10.18.48 Professor Smikodub Subtitles These are embryonic stem cells. These are cells which will restore immunity, restore vessels and cartilage, and different types of connective tissue. 10.19.06 Music 10.19.08 Professor Smikodub Subtitles They’ve been stripped of genetic properties and will live in Stefano’s body like his own cells. They won’t harm him in any way - just help. 10.19.16 Music 10.19.19 Narrator The first thing that Stefano feels is heat; a symptom of the stem cells passing through the blood stream, causing his blood vessels to dilate. 10.19.28 Music 10.19.31 Stefano Tricarico Subtitles I feel a bit hot. Even my face. My whole body. I feel rather hot. 10.19.39 Narrator The transfusion lasts forty minutes. What happens next is unclear – even to the Professor. 10.19.49 Professor Smikodub Voice over At this stage of the operation it's difficult to explain the precise way in which these stem cells act. We think that the embryonic stem cells are the healthy carriers of the gene which has been damaged. They produce the dystrophine protein missing in muscular dystrophy cases. This is then taken on board by the patient’s damaged muscles. 10.20.19 Narrator He claims his research shows that stem cells working this way have massively increased the flexibility of damaged muscles. But other stem cell researchers doubt it could be so effective. 10.20.32 Aston Dr HUSEYIN MEHMET Imperial College London One of the reasons I'm so doubtful is because our early animal experiments from my own lab and from several other labs around the world have shown that very, very small numbers of stem cells actually make it in terms of reaching the site of damage and in fact beginning to differentiate into the tissue of choice. 10.20.54 Dr Huseyin Mehmet That's because most of these cells are dying. They're not in the right environment. We haven't found the correct way to persuade them to carry on differentiating and proliferating once we've put them into the body. 10.21.06 Music 10.21.08 Narrator Soon, the first day’s treatment is over. 10.21.11 Music 10.21.19 Narrator In the next few days Stefano’s therapy will intensify. 10.21.22 Music 10.21.28 Narrator That night, in their hotel room, the strain on his mother begins to show. 10.21.32 Music 10.21.37 Grazia Tricarico Voice over Any other parent, if they found themselves in this position, they would do the same thing. A mother who is desperate and a father who is desperate, I don’t want to say anymore. I just live for Stefano. 10.22.09 Narrator The next day, at the hospital, Professor Smikodub seems enthusiastic. 10.22.19 Professor Smikodub Subtitles Now his muscles are working better. He can hold his head better. The muscles of his face work better. The muscles of his larynx. He moves his hands and feet better. All the doctors dealing with Muscular Dystrophy all over the world will tell you that this disease cannot be cured - just observed. We can see here that a cure does exist. 10.22.50 Music 10.22.52 Narrator Given such remarkable claims, it’s surprising that Smikodub’s work remains largely unrecognised. 10.22.57 Music 10.22.59 Narrator Though it’s hung all over the walls it’s yet to be published in any Western medical journal and is rarely presented at Western conferences. 10.23.09 Professor Smikodub Voice over I don’t believe our achievements have yet received the world-wide respect they deserve. I’ve written to Western clinical journals, both in the United States and in England. I wrote to them but I didn’t receive any answer. 10.23.29 Aston Dr BRIAN DICKIE Motor Neurone Disease Association He submitted an abstract to us, umm outlining that he had treated a number of patients umm, some of them he had given more than one course of the treatment to and they felt better for it. Now that isn't umm, scientific data; that's anecdote. We would expect any clinician who's conducting a proper scientific study in order to determine whether something works or not to, for example, have a placebo group so that we can determine whether people are feeling better because umm, of the treatment or simply because they think they're receiving the treatment. And also we’d expect some sort of independent assessment. 10.24.13 Narrator The Professor’s methods have also been criticised. For example, his injection of stem cells directly into the abdomen, as here with Signor Mauri, the patient with motor neurone disease. 10.24.25 Music 10.24.28 Narrator We showed this process to Dr Mehmet. 10.24.30 Music 10.24.31 Dr Huseyin Mehmet So it looks as if the doctor is injecting something into the abdomen without much attention to exactly where. 10.24.42 Dr Huseyin Mehmet I'm not aware of any evidence claiming that subcutaneous, skin injections effectively, of stem cells would successfully allow those cells to migrate to areas of the body that need to be regenerated, such as muscle. From what I'm seeing; highly suspect. 10.25.02 Music 10.25.04 Narrator But the Professor seems unconcerned about getting an independent review of his work in order to get it published. To his critics, that’s easy to explain. 10.25.16 Dr Huseyin Mehmet The only reason I can think of is that this is complete bunkum and actually there is no clinical benefit and the clinic concerned are probably worried that if they do open their doors to proper scientific examination that they will be exposed. 10.25.38 Professor Smikodub Voice over So does this mean that I have to write an article which will be published in a journal and that only after that will I be respected? No, I do not think my mission lies there. My mission is to cure, to help as many patients as possible, and then I can be respected. We write dissertations and then we are published in journals. They don’t take us in your journals. One time, they didn’t even have space to post our presentation. So tell me, who is to blame? 10.26.14 Music 10.26.16 Narrator Stefano’s treatment ends on the third day, with stem cell injections into his stomach. 10.26.21 Music 10.26.25 Narrator The effects seem positive. 10.26.27 Music 10.26.31 Stefano Tricarico Subtitles All fine. I am strong. I can overcome anything. I feel more flexible. More… how can I put it? More freedom in my movements 10.26.50 Narrator But without independent clinical trials, it’s impossible to know if this is a breakthrough or little more than a placebo. And yet, despite his critics, Smikodub’s clinic still receives the full backing of the hospital and Ukraine’s National Medical University. 10.27.11 Aston Dr NATALIA OLEKSIENKO Dep Director, Kiev Emergency Hospital Voice over He doesn’t need anyone to justify or defend him. Professor Smikodub is a completely established medical scientist. His methods have always been radical as far as traditional medicine is concerned so it’s obvious that they would always be criticised. But I think that work in this field could turn out to be a serious scientific breakthrough. 10.27.38 Dr Huseyin Mehmet I'm worried that there will be a backlash from the public in a few years time because what will happen is, as more and more patients begin to suffer the ill effects of, of badly controlled clinical treatment using stem cells then the public in the West will start to sit up and take notice and reject stem cell therapy outright and I think that would be a tragedy. 10.28.01 Music 10.28.05 Narrator Now back in Termoli, Stefano says he feels no ill effects and doesn’t care about these concerns. He just hopes that they won’t stop him or others from getting a treatment he believes in. 10.28.23 Stefano Tricarico Voice over I’m making an appeal, not to the parents of kids like me, but to the kids themselves, to say; you have to convince your parents to try this road if you want to live a dignified life like other human being’. 10.28.37 Music 10.28.40 Stefano Tricarico Voice over Not because I threw myself into it blind but because I realised it was the only chance I had, if I wanted to continue to have a decent life. 10.28.49 End Music Credits 10.28.54 Text THIS WORLD to 81010 Texts cost no more than 15p www.bbc.co.uk/thisworld 10.28.56 Voice over If you’d like to be reminded about upcoming This World programmes please text THIS WORLD to eight, one, zero, one, zero and we’ll send you a text message to alert you before each broadcast. Texts cost no more than fifteen p. 10.28.56 Narrator STEPHEN BARRETT Camera JONATHAN YOUNG TOM GILES AGNES TEEK Dubbing Mixer PHITZ HEARNE Online Editor BOYD NAGLE Production Team JULIA DANNENBERG LADONNA HALL Production Manager JANE WILLEY Unit Manager SUSAN CRIGHTON Film Research NICK DODD Archive TELE MOLISE Research SABINA CASTELFRANCO VICTORIA BUTENKO SHAHIDA TULAGANOVA Assistant Producer AGNES TEEK Picture Editor MATTHEW STERLINI Executive Producer KAREN O’CONNOR 10.29.17 Produced and Directed by TOM GILES BBC © BBC MMV 10.29.21 End BBC This World Investigations: Last Hope Clinic 1 1