“I can’t tell you much and don’t say anything about me unless I say it here,” insists T, a source who “had links to” the X-Cell centre in Düsseldorf. The centre offered patients from all over Europe highly experimental stem cell therapies for a wide range of conditions from Parkinson’s disease to diabetes. T will only allow me to divulge that she is a clinician. Among her concerns is that being linked to the clinic could make her current and any future position extremely difficult.
“They weren’t doing anything illegal,” T insists, “and we really helped people. I think everybody thought that what they were doing a good thing.” At the suggestion that, for most patients who visited the clinic, all they got for their troubles was £10,000-£20,000 of debt, T does not deny this but writes, “We gave them hope, too, but you probably think thats [sic] cruel.” Not once in our correspondence does she talk of clinical outcomes of a more measurable or physiologically significant nature than “helping” or “hope”.
Early in May 2011, the German clinic was forced to close. In August, its directors filed for insolvency stating, “German advisory authority has denied further authorization for stem cell transplantation.” The very existence of the clinic relied on its exploiting a legal loophole that allowed patients to be charged for so-called therapies that had yet to be proven safe or effective. In the treatment of the seventeen conditions for which the clinic advertised therapies, the type of stem cell transplantation offered has no biological plausibility of working.
As described in the second part of this series, there are different types of stem cells. Some can become any cell of the body while others have more limited potential. At the X-Cell Centre, cells were harvested from patient’s own bone marrow and injected into their brain, brain stem or cerebrospinal fluid. These multipotent bone marrow-derived stem cells could only ever differentiate to become one of a number of blood cell types, making their injection into nervous tissue not only pointless but totally without rationale. When confronted with this, T reverts to what, throughout our online conversation, was becoming a mantra, “lots of people said it helped them.” By “people”, in this instance, she means patients. “People at Xcell,” this time referring to staff at the centre, “used those [bone marrow-derived stem cells] because fetal [sic] cells you can’t get and no-one wants them.” Her next statement, I believe, was not intended as irony, “…no-one knows if fetal ones work.”
Staff at the X-Cell Centre had been feeling pressurized as their work was being scrutinized ever more intensely following the death, in August 2010, of an eighteen-month-old Romanian boy. The fatality followed the serious injury of a ten-year-old child, in the preceding May, while undergoing the same therapy – stem cell transplantation into the brainstem – that resulted in him being more disabled than he had been before treatment was begun. Dr. Michael Sabel, the consultant neurosugeon and his team at the University Hospital Düsseldorf saved that child’s life when the ten-year-old was brought in to them with severe internal bleeding. Sabel, shocked that such dangerous and experimental procedures were taking place legally, wrote to the German authorities warning – as it turned out, predicting – that children would die if the clinic continued conducting this procedure. When the operation was botched once again, the eighteen-month-old victim was not taken to Sabel at the University Hospital just five minutes away from the clinic but, in what one can only assume was the centre’s hope that its injury rate might go unnoticed, was driven to another hospital fifteen miles away.
Dr Uta-Kristein Tamaschke
The doctor responsible for injecting stem cells into the brains of these unfortunate children, neurosurgeon Uta-Kristein Tamaschke is now under criminal investigation for, as Dr Sabel sees it, “an unjustified surgical procedure…[injecting] stem cells into…the most delicate structure in the brain.” When pressed, T describes Dr Tamaschke as “A nice lady…I’m not going to say anything else about her. Next>>>” I ask T if the patients she had contact with were aware of just how experimental the procedures on offer at the X-Cell Centre were. “Most English patients did…but because [the centre was in] Germany they think it’s only cause the health service thinks it’s [the therapies] too expensive they can’t get it there [in the UK]. People came from all over though.” Asked if she or anyone else explained to the patients that the therapies were of unproven safety and efficacy, she retorts, “there [sic] not!!! lots of people are helped by stem cells and lots of them got helped at the centre. Lots of people are really devastated that it shut down it was their last hope.” This statement alone begs the question of how informed was the consent to therapies given by patients. If the rest of the staff had the evangelical zeal of T, it is difficult to imagine that patients would anticipate outcomes other than success. Journalist Alisdair Palmer has multiple sclerosis and uses a wheelchair. In an undercover investigation of the X-Cell Centre for UK newspaper The Telegraph, he was told by Professor Haberland, “you have a win-win situation… 80 percent of our patients report improvements.”
Experts in the field of stem cell technology are enormously relieved by the centre’s closure. Professor of regenerative medicine at University College, London, Chris Mason, is delighted: “This is excellent news… X-Cell had failed to demonstrate its treatments were… safe and effective.” His views echo words of a press release by German medicine regulator, the Paul-Ehrlich Institute, which “welcomes the news that the X-Cell Center is not accepting any more cases.”
When pressed, T reveals that the data relating to clinical outcomes was based on little more than robust patient questionnaires. I wonder to her whether people who had spent as much as £20,000 of their money, donations raised from others or heavy bank loans, were be able to be objective. Did she, and other clinicians, believe that patients themselves are qualified to assess the outcomes of a procedure? She counters that the clinic offered a few follow up appointments in the cost of the treatment and that it was assumed that patients who failed to attend were doing well. Perhaps, I suggest, patients weren’t attending because they were too ill to do so or simply could not afford the travel expenses. She rejects this idea out of hand describing some patients as “too lazy to come back. If they can afford the treatment they can afford the travelling [expense].” If they could not, she suggests it would be “dumb to come.”
Desperate families and patients who have paid often substantial deposits to X-Cell may get very little – if any – of their outlay back. The Company’s insolvency administrator, Professor Sinz, asks for “understanding that, at the moment, it is not certain yet how much money I can refund to you.” In the light of a child becoming more brain injured than he ever had been and another losing his life because of “therapies” administered at the X-Cell Centre, patients who, having paid for transplants that will now never take place, should count themselves fortunate that it is only money and false hope they have lost.
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