I know the risk. It's my only hope


Audrey Jones was told her illness was incurable - but then she learnt about a contentious Chinese treatment. She tells her story to Amelia Hill

Sunday December 16, 2007
The Observer


Audrey Jones is still unable to put into words how it felt when she was told last year that the low-level fatigue she had experienced for years was a sign that her brain was dying.
But it was the complete lack of hope that drove the ex-Lord Mayor of Manchester closest to despair. There was no treatment and no cure for the condition she had developed, her neurosurgeon said. Within a couple of years, cerebellar atrophy, a degenerative process similar to motor neurone disease, would rob her of the ability to control her movements. She would be unable to walk or stand up. Controlling her movements enough to drink a cup of tea or read a book would be beyond her. Within four years, he added, the disease would kill her.



'It was like I had been attached to a brick balloon and dropped through the floor,' she says from her home in the south of the city. 'To be told there is no hope is as low as it is possible to get. Without hope, there is nothing.'
There was one treatment that could possibly slow or even halt the degeneration, her doctor had admitted, but it wouldn't help her. Stem-cell therapy was emerging as a promising approach to treat a range of degenerative diseases, he said, but it was still the stuff of sci-fi: a medical holy grail that wouldn't be available in her lifetime.

'It is dreadful, but life is dreadful for lots of people. I accepted I was going to die and decided to get on with it,' says Jones, 74. 'I continued as Lord Mayor, but soon I needed a wheelchair and the full-time help of two strong assistants to haul me up and down stairs.'

Then two months ago, Jones - a mother of four who has been a Liberal Democrat councillor in Manchester for 29 years - received a phone call from her daughter, Helen. 'She told me about a man suffering a hereditary form of the same condition as me. Over 30 members of his family had died from the disease, but instead of taking the word of the British doctors who told him there was no treatment, he had taken matters into his own hands.'

Brian O'Neill from Tarbert, Argyll, had discovered the only facility in the world that offered stem-cell therapy to sufferers of his condition: Beiki Biotech at the Shenzhen Beike cell engineering research institute in China. For $23,500, doctors at one of the four hospitals for which Beike supplies stem cells offer a month's treatment, during which they give patients five injections of cells taken from the umbilical cord blood of new-born babies.

'From having nothing to hope for, suddenly I had a glimmer of a future; I was so happy that I felt like I'd recovered,' says Jones.

She has chosen to receive her treatment at Beike's stem-cell treatment centre in Qingdao. The Nanshan Hospital, the biggest in the western part of Shenzhen, has sent her information emphasising that it has 1,000 beds and more than 1,000 employees and a neurosurgery department with 11 doctors. The hospital says it has been focusing on stem cells and biomedical research since 1999 and has been administering stem-cell injections since 2001. It says it has treated more than 600 patients for brain trauma, cerebral haemorrhage, cerebral palsy, Alzheimer's, MS and spinal cord injury.

However, there is much disquiet among medical specialists about the treatments being offered. The Beike institute claims to have seen rapid improvements in patients' conditions, but there is no long-term data available from the Chinese to show how effectively the treatments work.

Dr Anna Krassowska, research manager at the UK Stem Cell Foundation, a charity set up to advance pioneering stem-cell treatment in medical practice, is worried about the claims made by the Chinese hospitals. She told The Observer: 'I can say that, to my knowledge, there is no scientific evidence of effective stem-cell treatment of cerebellar atrophy.

'The difficulty with treating brain degeneration with cell therapy is that you are trying to replace lost neurons [nerve cells] and these neurons must make complex connections to the cells around them in order to function.

'What worries me here is that patients who are very ill may be at best given false hope, but at worst be at risk of further harm. I can understand why people would want to try anything that may help, but they should be aware that there are good reasons why such treatments are not carried out in the UK.'

There is also a more ugly side to medical research in China. The organs of executed prisoners are regularly used to carry out organ transplants for wealthy foreigners who are desperately ill. China has said it is reviewing the system and the regulations surrounding transplants and says that it involves only a few prisoners, but British surgeons have condemned the practice and raised further concerns about the source and quality of other medical material. The Beike research institute says the stem cells it uses come from umbilical cords of babies.

Jones remains unconcerned. 'There are three possible sources of cells in this treatment; the first two are controversial, using adult tissue and embryos, but the third - the one available to me - is unopposed by any party: taking cells from umbilical cords.

'What could be unethical about buying cords and placentas from mothers? I don't see any problem with that. It would be thrown away otherwise.'

On arrival at the hospital, Jones will be given an ultrasound, EMG and MRI or Cat scan. After that, she will receive the injection of stem cells and nerve growth factors, either directly into her spinal cord, under local anaesthetic, or into her hand through an IV drip. Each injection will take 30 minutes and will hurt for the first 15 to 30 seconds. Jones will receive twice-daily rehabilitation, six days a week. After her month's treatment, she will be interviewed but receive no further assessment, which sets off alarm bells for some doctors who point out that without such information it is impossible to establish whether the procedure has worked.

'My GP has been very enthusiastic,' says Jones. 'His exact words were, "You have nothing else to hope for, so go for it." But my specialist hasn't returned my calls, telling him what I'm planning to do. It must be very disappointing for him to not be able to help me himself.'

Jones has booked her treatment and will leave for China early next year. Despite her excitement, however, she is determined to keep her optimism under control. 'The institute has made me no false promises about my recovery. A lot of people benefit from this treatment and some don't. I might improve, I might not. That's just a risk I have to take.

'The most important thing is that it gives me hope, and that is something I have to grasp with both hands.'

Stem cell science

How stem cells are being used in research to find treatments for incurable diseases.

Heart attacks

A major study in London is investigating whether heart attack patients who have their stem cells injected into their hearts within five hours of an attack have a better quality of life, or can avoid or delay the onset of heart failure.

Parkinson's

Parkinson's disease is caused by the loss of nerve cells in the brain that produce a neurotransmitter called dopamine. Researchers believe stem cells can be cultivated to become these nerve cells.

Hip replacements

Scientists want to see if an injection of a patient's stem cells into the structure of the bone graft will improve the strength of the implant and lead to the bone in the hip joint regenerating.

Spinal cord injuries

When the cord is cut, the complex relationship between the brain and neurons (nerve cells) make reconnection of the nerve cells difficult. But it should be possible for stem cells to help the connections to be remade.

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