Destination: Hope

People who aren't willing to wait are travelling to have stem-cell therapy at unregulated clinics in countries such as ...

People who aren't willing to wait are travelling to have stem-cell therapy at unregulated clinics in countries such as China, India and Germany at a cost of up to $60,000 a treatment.

A video on the fetal cell technologies International (FCTI) website opens with a shot of a field covered in golden leaves and dappled sunlight. Heart-tugging piano chords strike up as the words "In early 2009, two autistic brothers from California, age four and six, were treated with precursor stem cell therapy" appear, and the leaves gradually darken until they are all a deep, vital green. It cuts to a shot of the boys' mum, sitting in front of framed family photographs, detailing how their behaviour has improved, from no more tantrums in shops to being able to go to the beach. "I'm so blessed that we had the opportunity to do it," she says.

Swiss firm FCTI - its Asia-Pacific base is in Malaysia - touted for business in Australia last May, staging presentations in Sydney and Perth on the alleged benefits of the treatment, which involves being injected with cells taken from rabbit foetuses. The company's website says such cells can help treat autism, Down syndrome, diabetic complications, cerebral palsy, Parkinson's disease and "age-related disease".

Studies suggest that stem cells, which have the potential to develop into different types of cells (there are more than 200 types in the human body), might be able to repair or regrow tissue and treat various medical conditions. They offer hope to people with conditions that mainstream medical science can't yet cure. But such treatments take years to be approved in Australia, so FCTI and clinics like it are banned from operating here. About 20 clinical trials are under way worldwide into stem-cell treatments for conditions such as motor neurone disease (MND), Parkinson's disease, stroke, cerebral palsy and spinal cord injuries; the two here are aimed at heart failure and corneal damage.

But people who aren't willing to wait are travelling to have stem-cell therapy at unregulated clinics in countries such as China, India and Germany at a cost of up to $60,000 a treatment. Professor Bob Williamson, secretary for science policy at the Australian Academy of Sciences, estimates as many as 200 Australians have done so. "Obviously, with people suffering from a disease like cerebral palsy or a spinal cord injury, you can certainly see their point of view - they feel like time is slipping away. Often they will go somewhere that doesn't have rules and make use of it. But one has to say that sometimes the risks are positively terrible."

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The first gamble is whether or not the cells are safe to use. An Israeli boy developed a brain tumour in 2005 after stem cells were injected into his brain at a Russian clinic; an investigation found that the cells came from at least two human sources. As stem cells divide and grow inside the patient, they need to be screened for cancerous potential, as well as diseases like HIV and hepatitis C. Chinese hotel manager Hong Chun, 27, collapsed last year following treatment for a minor stroke at a Shanghai army hospital.

He fell ill on a train the day after having cells injected into his spine and buttocks, and was rushed to another hospital where he was pronounced brain dead. The XCell Centre in Düsseldorf, Germany, was closed in 2011 following questions over the death of an 18-month-old baby who had stem-cell injections in his brain.

Then there's the question of following up the treatment - not just to check the health of the patient, but also to design the best protocol for the future. "We want to learn how to do it right," says Williamson. "If someone goes to another country, sometimes you only hear about the people who feel better, not the ones who don't."

Dr Simon Koblar, an assistant professor at the University of Adelaide and neurologist at Adelaide's Queen Elizabeth Hospital, has treated 16 people who have travelled overseas for stem-cell treatment for various illnesses, including MND, multiple sclerosis and stroke. "Un-fortunately, my experience with these patients is that although some of them felt they'd improved, it's not been obvious to me that there's been a significant improvement," he says.

He links minor improvements to the placebo effect. "If you say, 'Here's a medicine that's going to cure you', 20 per cent of people will respond to that suggestion. You put in all that effort [travelling for treatment], then people will feel better."

Koblar says one of his patients paid $40,000 for stem-cell therapy in Europe. When he ran tests on their return, there was no evidence they had even received any stem cells. The lack of recourse when something goes wrong is one of the failings that Dr John Rasko, head of the department of cell and molecular therapies at Sydney's Royal Prince Alfred Hospital, warns against.

"Our regulatory environment protects people against the risks of unproven therapies while attempting to make a timely and well-constructed environment in which to make cutting-edge, safe technologies," Rasko says. However, he agrees that trials could be sped up. "We have to employ new staff just to fill out the paperwork. Of course, things can be streamlined and made better."

But no matter the warnings from medical experts, people still travel. Dr Megan Munsie, of Stem Cells Australia, an Australian Research Council-funded initiative into stem-cell research, is working with Professor Alan Petersen of Monash University on a sociological study of the motivations behind stem-cell tourism. They're hoping to interview about 80 people over the next two years to learn from their experiences. Good Weekend met five people who have already travelled overseas for stem-cell treatment.

Andrew Macintosh

The first symptoms hit in may 2010 - muscle twitches and cramps and fatigue - but Andrew Macintosh figured he was just overdoing it in the gym. The former triathlete was 112 kilograms of muscle, training up to four hours a day, six days a week ahead of his first bodybuilding competition. Besides, he had a lot on his mind. His girlfriend of two years, Nicole Johnson, was suffering from narcolepsy. Then there was his job at the NSW Department of Community Services investigating sexual assault and severe physical injuries in children on the state's central coast.

But the twitches were around the clock. He was bedridden with a virus for five weeks. It became hard to walk and his calves felt constantly cramped. Then his right thumb stopped working. After two months of tests, a specialist told him in September that he had motor neurone disease - and two years to live.

"That took a while to digest," says Macintosh, 38, sitting in a wheelchair in his and Johnson's recently built two-storey house on a new housing estate in Mardi, near Tuggerah, NSW. His voice is slurred but his gaze is steady, although he has to dip his head to sip tea through a straw, and he chokes every few mouthfuls. "I'm very stubborn, and when I came across the stem cells [via internet searches], it gave me hope. I knew there wasn't a cure, but potentially a treatment option."

Macintosh researched different centres, settling on the Tiantan Puhua Hospital in Beijing. It offered physio, stretching, acupuncture and massage as well as the injections. They returned his initial query overnight, and he arrived there a month later, in October. He was exhausted walking just 100 metres by this point, and was frequently falling.

"There's always the possibility with the lumbar injection," he says, "that they're going to f... it up and you'll be worse. Paralysed. But when you're dealt this hand ..."
"You'd try it, you'd give anything," says Johnson, 32. "A lot of people say you're wasting your time and you're giving false hope but ..."

"There were a lot of people who said that," adds Macintosh. "Medical people."

He spent four weeks in hospital, having one injection of stem cells in his spine every seven days, plus five hours of rehab a day. On top of the Great Wall of China, he asked Johnson, who flew over to join him, to marry him. "My stamina was better," he says. "I didn't have any more movement in my arms but I was walking better and I felt better internally."

He was signed off work a few months later after falling off his walker and putting his head through a wall. It was January 2011. "The two things that have a strong correlation with this disease are flu and stress," he says. The couple were building their house, planning a wedding, living in a "little shithole" of a rental and dealing with the MND; things went downhill. They married in April. A fundraiser two weeks later to support a second trip to China, in June, raised $41,000. Before he went, his bowels and bladder didn't work, he couldn't swallow properly or hold his head up, and his arms were paralysed.

"I think if I hadn't had the second treatment, I'd be dead," he tells me in mid-November last year. "I think I was going that quickly. The average life span after diagnosis is 12 to 18 months and what are we now, 14 months?" He adds, "What it felt like was my body was giving up, and what it feels like when you have the treatment is that your body is able to fight."

Does he have follow-up treatment from the clinic? "We can email them if we want. They're open to the communication but ... they're not fluent in English and it's hard to get the appropriate questions and answers." It is, he agrees, a little frustrating. Despite having spent $80,000 on his treatment, he's not sure if it should be allowed here. He had foetal and embryonic cells in China; the country's one-child policy means more of these are available there. Macintosh says he has "no doubt" people would get pregnant here to sell their foetuses.

Macintosh would like to travel to China again soon, to help his growing problems with speech. They held a fundraiser last month, but are still thousands of dollars short. "I think [the MND] will get worse again. It's ongoing and if we can't afford it, we'll have to see what happens."

Moana and Leilani Faasisila

"I remember seeing a very blurry shape behind the gym window that I couldn't see before," says seven-year-old Leilani Faasisila, perched on the edge of the family's cream sofa, the house filled with the hubbub only five kids under 10 can produce. "It was one of those big balls you do back bends on. I was like, 'Look, Mum, look!' Before I couldn't see, like, one of my best friends or a step or things."

Leilani and her sister Moana, 9, were born with a rare genetic condition called Leber's congenital amaurosis, which meant their retinas didn't grow properly. Moana's sight was worse, with just some light perception, while Leilani's had no depth.

So when mum Honi, 38, and dad Manase, 41, heard about a hospital in China that claimed to have successfully treated patients with compromised eyesight, they did some research. Honi is an assistant principal at Marks Point Public School, by Lake Macquarie on the NSW central coast. Manase stays at home looking after the kids, but is set to train as a policeman.

"You never know what you're seeing on the internet with these images," says Honi.

"Are they true? Are they just pretty advertising? To double-check - that we weren't going to get there and it was going to be some shack and someone's doing something dingy with dirty needles - we spoke to families [who had been]."

One Australian family they tracked down told Honi they were planning their second trip despite their daughter's sight remaining unchanged after her first visit. "I thought, 'Well, that says something if a family is willing to give it another shot. It couldn't have been an awful experience for them.' I also spoke to professionals; we really did our research. It wasn't a desperate decision."

But their decision was different to that of the chronically ill - it was to improve the girls' quality of life. If the procedure worked, there was the chance of 20/20 vision. "We'd love a miracle ... who wouldn't want that for their children?" But if something went wrong, it could blind the girls. "Though we might think, 'Oh big deal, she didn't have much anyway, so she hasn't lost much', if that's all you've got, it would be devastating."

What clinched it was their faith - both parents are strong Christians. "We base decisions on physical evidence, but also on a spiritual level as well," says Honi. "If you feel at peace about your decision, then you act on it."

She then haggled the price down - "I rang up China thinking, 'Gee, I hope they speak English' " - from $23,000 to $15,000 per child. The money came from a fundraising effort from their previous community in Quakers Hill, in Sydney's north-west.

Neither girl enjoyed the weekly stem-cell spinal injections of donated cord blood, after which they had to lie still for six hours. Leilani says they were "painful" and Moana calls them "annoying". They also had intravenous injections, acupuncture, acupressure and electrowave therapy. "[My eyesight] has got better," says Moana, "but not so much I can see colours." She can see red lights now, which she classifies as "dark", and her optic nerve function has improved. As Moana gets up, Honi still has to guide her around a table: "Stop, Moana, to your right, to your right - keep going."

The girls are still receiving follow-up calls from the clinic at the Chengyang People's Hospital in Qingdao, Shandong Province, but a return visit may be some time off; Honi was about 35 weeks pregnant with their youngest child, Canon, when they returned from China. The family would like a break from doctors and hospitals, and are waiting to see how the treatments progress.

"We have a hard time imagining, 'How do our children see? What do they see? What is life like for them?' " says Honi. And, even though the improvement might seem minimal, she adds, "despite not being the major miracle we wanted, we got a little miracle".

Rod Watson

No one has minced their words since rod Watson crashed a motorbike on his buck's night in 2008 and broke his back, aged 27. Not the doctors who told him he'd spend the rest of his life in a wheelchair. (He was rated a "T12 complete" paraplegic.) Not his case managers, who told him not to waste his money travelling overseas for an unproven cure. Not even him, who describes his spine as "like a fully kinked garden hose, nearly 100 per cent squished".

But plain talk sits fine with Watson. He's a working man - back at his job as a fitter and welder six months after the crash - and once he sets his mind to something, he'll get there. There are problems and there are solutions, and if you haven't found the answer, you've not tried hard enough.

So, soon after the accident, he began looking for something that would help him, maybe see him walk again - "Googling, Googling, Googling," as his wife, Danielle, 31, describes it. There were 100 hours in a hyperbaric chamber, but that was expensive. Then reflexology, acupuncture, swimming. A doctor near where they live, at Cockatoo in Victoria's Dandenong Ranges, told them he'd heard of people heading overseas for treatment for cerebral palsy. Maybe someone treated spinal cord injuries? Then there was a doctor at Melbourne's Austin Hospital, where the city's main spinal-
injury unit is based, who told Watson about centres in Germany using concentrated stem cells from your hip - no chance of rejection because they're your own cells - and that it would come to Australia, so keep fit and well for when it did.

"I wasn't prepared to wait another 10 years," says Watson, 30, in an unruffled voice. "I want to be fixed as soon as I can be."

First stop, a six-day spell at Germany's XCell Centre in January 2010. He had one spinal injection that left him with a slight headache. Cost: $20,000 (his mates put on a barbie at the local bowls club in Cockatoo and 200 people showed up). He was told there was a lot of damage - that kinked garden hose - and that it was borderline if the cells would take. "I'd have been quite depressed [if there'd been no result] but I think I would have eventually talked myself into going back," he says.

There was improvement - more strength in his thighs - but he thought, "I can't live my life like this." He'd been working hard at physical therapy since returning, including the Walk On program of intensive physio in Sydney, but the cost of travelling was adding up. The doctors in Germany had told him he should return in 12 months, as he'd see better results, so he sold his house and headed off last September.

XCell was closed by this point, so Watson chose Stemedical in Leipzig, in eastern Germany. Same procedure, same time frame, same risks - infection from the injection being the major one. He came home and carried on with intensive rehab.

He estimates he's at 20 to 30 per cent of full motor function and has been rated by doctors as "incomplete" - stage B on the official American Spinal Injury Association impairment scale, one step up from complete paraplegia.

"The harder I work now, the more I'm going to get out of it, and I'm convinced of that," he says. "Ten doctors tell me no, I'm still gonna do it anyway 'cos it's me in the chair, not them."

Is he satisfied to this point? "I think so," he says. "To give such a complete paraplegic a little hope is money well spent so far, yeah." He says it's impossible to nail down what's worked, the stem cells or the hard yakka he's putting in, but without the first, the second may not have been as successful. "Knowing that the first treatment helped a little bit, you still see that light getting a bit closer," he says.

He's willing to do what it takes to walk again, including travelling overseas in another year if he's not back on his feet. They'll find the money somehow, but not from fundraising. "Being a working man, you feel bad," he says. "If my mates were gonna do it again, I wouldn't feel comfortable."

Danielle takes a break from keeping an eye on their one-year-old son. "Say if something was wrong with Riley," she says. "If there is something you can do to improve the quality of their life, well, you do it."

Stephen Walker

His voice is rich and rolling and perfectly suited to radio. Stephen Walker, a presenter on Melbourne's 3RRR radio station, Australia's oldest independent broadcaster, announces the next track on his Skull Cave show, and the only visible sign of the 61-year-old's condition is a slight tremor in his hands.

That wasn't the case before his trip to Germany's XCell Centre for stem-cell therapy last April, just a few weeks before it was closed by authorities. He has had multiple sclerosis for almost 20 years, but the disease had progressed very slowly. Still, he hadn't been able to walk for two years and was often in pain. "I've been pretty lucky, if you can be lucky with MS," he says. "It's basically been from the knees down. I mean, I've got other symptoms, too, [but] my mental acuity has been fine; my voice has been fine."

But the illness was progressing and it was preventing him from doing things he wanted, such as going to gigs. As with any chronic disease, he talks of depression and self-worth issues. "It's not quite as 'sexy' as something like cancer - 'You can beat it! You can beat it!' - it's more like rust, it just grinds on and on and on."

When he was first diagnosed, aged 43, he went straight to the medical texts in his local bookshop and discovered the prognosis for people with MS. "It was as if the earth had opened up into this incredibly dark hole."

A conversation with friends on his 60th birthday in April 2010 began his journey. The talk turned that night to what MS was and whether it could be treated. Stem-cell therapy was mentioned, so a group of them decided to host a benefit concert to pay for it. "So [to] all those people who say, 'Ooh, you know it's not proven, how about that?', I say, 'What else you got for me?' "

He's celebrated 30 years at 3RRR playing indie-rock - including a long stint as station manager - and "The Ghost", as the Healesville man is known, has made a lot of friends. Bands like Dirty Three played at the benefit gig in January last year. All 1200 tickets sold and it was "one of the great nights of my life", says Walker, slightly overwhelmed. The night raised about $30,000.

Why did Walker choose Germany? For the Germans' "Teutonic, efficient and coldly clean and sterile approach", he says, apologising for the generalisation. "It appealed more than perhaps taking a punt in China or one of those places."

He flew to Cologne for his six days, and was put through a complete physical that gave him a clean bill of health - apart from the MS. "It made me think if I can get rid of this MS, I'm going to be sticking around for a while and having a pretty good quality of life," he says. He mentions how his stem-cell sample had nearly three times as many cells as needed and they had "pretty potent" vitality. The treated cells, which were taken from his hip, were put back into his system via an IV drip.

While Walker was told he should see improvements in six months - no promises were made - they came almost immediately. Eight months on, with an eight-kilometre ride each night on a MOTOmed exercise therapy machine - on which his legs push against five kilograms of resistance to build muscle - the news is still good. Tremors and spasms? Virtually gone. Visual disturbances? Gone. Chronic fatigue? Gone. He hadn't had any flexibility in his left leg for more than a decade. Now he can wiggle it. And the toes on his right foot, the first signs of illness from 20 years ago, are starting to move.

"It's sort of been going in reverse," he says.

"You can imagine what it's like when it's been going the other way, the turnaround psychologically," he adds. "I suppose being told what a healthy person I am inside just made me feel better."

He muses over why stem-cell treatment is not available here. Maybe the establishment's having a hard time adjusting to something new and radical?

"I dunno," he says, "it's almost like it's viewed as a threat rather than a solution."

Walker has heard the people who ran XCell have moved to Lebanon. He's going to see what the future holds, but he knows how much his condition has improved. "To have another trip," he says, "that would be really good."

From: Good Weekend