One man's story- I travelled in hope to stem cell clinic
It could be an uphill battle for X-Cell to prove efficacy for all the conditions they treat. This man is no different from the rest of us looking for something that can help him. I thought his story was well told.
The XCell-Centre holds out hope of a treatment for incurable diseases. Alasdair Palmer, who has MS, travelled to D?sseldorf for a consultation.
By Alasdair Palmer
22 Jun 2010
Link to video
http://www.telegraph.co.uk/news/newsvideo/8082001/Hope-of-a-cure-at-Europes-largest-stem-cell-clinic.html
Hope is important to everyone, but it is particularly precious to those who suffer from an incurable disease. I am one of that group. I was diagnosed with multiple sclerosis nearly 20 years ago.
I now have to use a wheelchair, and the future is not particularly rosy. So whenever I hear that there has been a new scientific development which could turn out to be a cure, or which could at least halt the progression of the disease, I start to hope.
I know that, on every occasion in the past, the news of a cure has turned out to be false: the claims that the new treatment can reverse MS have, on closer inspection, all turned out to be bogus.
But I can't stop myself from hoping that this time it's different: this time the elixir really has been found.
Like everyone else with a neurological disease, my hopes have been, and are, raised by stem cell research.
In theory, there is every chance that eventually, stem cells ? the cells which have the potential to convert themselves into any kind of specialist cell in the body, from brain and nerve cells to the cells that make up your skin or your liver ? might eventually provide an effective treatment for MS.
But progress towards that goal is in practice proving to be agonisingly slow, not least because everything that has the potential to do good can also do harm.
It requires a great deal of research to show that a therapy isn't going to be damaging. The history of medicine is littered with treatments that seemed to be miracle cures, but turned out to be harmful.
Even techniques such as heart transplants, which are now routinely practised and save thousands of lives around the world every year, started by killing all the patients who had them.
None the less, when I was asked by the editor of The Sunday Telegraph to investigate a medical centre in D?sseldorf that offers stem cell treatment to those who can afford to pay for it, I was immediately intrigued.
I'm aware that a British doctor has been struck off the medical register in this country for offering such treatments. I've also written sceptical articles about the claims made by doctors who say they can provide stem cell "cures" for MS.
I've also read non-technical summaries of the scientific papers published in medical journals which point to the difficulties with existing stem cell techniques, and to the fact that there is as yet no trial which has provided solid evidence of their benefits.
And yet ? there is always the possibility that a brilliant medical researcher has come up with a very effective technique which, while it has not yet been proved to be effective, actually is.
So in spite of my well-rehearsed scepticism, the XCell-Centre in D?sseldorf got my hopes up. A quick glance at its website demonstrates that its doctors are very confident that their stem cell treatment is effective in treating MS and other neurological diseases.
My hope focused on a single thought: it is surely not impossible that they have found something that works. And if it is not impossible ? mightn't it be worth trying?
I booked myself a consultation with Professor Doctor Haberland. I was immediately informed that it would cost 300 euros, and that I would have to pay before the consultation.
The X-Cell Centre is housed in a large hospital building overlooking the Rhine. As I waited for my appointment, it was clear that everyone else who was waiting for a consultation suffered from the same hope that I did.
Some of them were considerably more desperate for a cure than I am. One woman with advanced Parkinson's Disease ? she had travelled all the way from the United States ? told me quite simply that she knew the treatment wasn't scientifically proven.
She even realised that there was a significant chance it wouldn't work. "But what is my alternative?", she asked plaintively. "For me, there is none, except waiting until I degenerate to the point where I die, or want to die."
Our conversation was interrupted because I was called in to my meeting with Professor Haberland.
He is a genial man with an air of intense professional competence: he is a trained neurosurgeon who has spent most of his career working on injuries to the spinal cord. He was friendly and patient.
He said that his treatment consisted of taking stem cells from the patient's bone marrow, separating them, and then injecting them.
"We have some amazing results with this treatment," he told me.
He insisted that the best results came from combining this approach with an operation developed by an Italian doctor named Zamboni, which involved, Prof Haberland said, widening veins in the patient's neck.
Zamboni had, Prof Haberland claimed, established that many neurological conditions were connected to a narrowing of these veins.
When the operation to widen them was used in conjunction with the injection of stem cells, "you have a win-win situation ? 80 per cent of our patients report improvements".
He pointed to a Dutch patient who had been in a wheelchair prior to the operation, but after it, had been able to walk.
So if I had the treatment, would I be able to walk? "You would have a chance", Prof Haberland replied. "The response is very different from patient to patient. But you would have a chance." And it would only cost about 19,500 euros.
Against my better judgement, I felt my hopes rising. But there were also some questions. How did Prof Haberland know how successful the treatment was? What was the follow up? "We ask patients to fill in a questionnaire three months after the operation, and we see them here and test them after six months", he said.
There is, however, considerable doubt whether a patient questionnaire has any value, since it is not an objective measure.
There is still more doubt as to how many patients actually bother to travel all the way to D?sseldorf for an assessment by the centre six months after the operation.
Moreover, Prof Haberland said he had only been doing the double operation ? the combination of stem cells and widening the veins in the patient's neck ? for six months.
How, I wondered, could there be any reliable data from such a short period? Would Prof Haberland be publishing his results? No, he said: he had no plans to. "We need more cases and then we need to make a double blind study in multi centres. This is a long way off."
But if Prof Haberland hasn't enough patients for a proper trial ? how can he be sure even that his operation isn't harmful, let alone that it actually benefits patients?
He was unequivocal that because he uses stem cells from the patient's own body, injecting those cells can't hurt the patient.
It certainly sounds plausible. But no one can know until there has been a large-scale study.
Professor Neil Scolding of Bristol University followed six patients with MS after they had been injected with stem cells taken from their bone marrow for over a year.
Careful monitoring showed that none of the patients were harmed. But the evidence of benefit was less certain: rather than any improvement, it suggested that the patients' condition had stabilised instead of deteriorating further.
It became increasingly obvious in the course of my discussion with Prof Haberland that he does not have any clear, objective and verifiable evidence that his treatment provides the sort of benefits that he claims for it.
It is not even clear that he and the hospital have followed up their patients at all. I asked for any records showing objective evidence of how patients improved after the operation. None have been provided.
That was not enough to extinguish my hopes altogether, however, for Prof Haberland is very persuasive.
He is a subtle salesman. He held out the possibility that I would experience enormous benefits from his operation ? but he did not promise them outright. That leaves just enough room for hope to do its work of eroding doubt.
I recorded my interview with Prof Haberland, and showed a transcript to Prof Scolding, an internationally-recognised neurologist and expert on stem cell treatments for MS.
Prof Scolding noted that Prof Haberland's claims about what bone marrow stem cells can do are not, in principle, wrong ? but he also pointed out that that is quite different from showing that his treatment can or does make the symptoms of anyone with MS improve.
Prof Scolding was more forthright in his criticism of Prof Haberland's claims for the "vein clearing" operation developed by Zamboni.
"There are potentially serious consequences for stenting for this so-called condition ? one patient has died in the US," Prof Scolding stated.
"There is emerging published evidence that there is no link between venous drainage in the neck and MS.
"Applying this 'treatment' to patients with Parkinson's and other neurological conditions ... is extremely eccentric."
He added: "If patients had genuinely responded to [Prof Haberland's] evidence-free combination of stem cell therapy and vein clearing treatment, it would be scandalous for him not to have published his results.
"To my mind, if they are persuading often-desperate patients to pay large sums of money for treatments that have no sustainable evidence to support them, it is cynically exploitative and a disgrace to the practice of medicine."
That, to me, sums it up perfectly. It extinguished whatever hope Prof Haberland had kindled in me.
