TWELVE THOUSAND MILES. That’s how far it is from 17-year-old Gabriel Omar Santoro’s home in Argentina to Beijing. It’s a journey he’s made twice in the past year — but neither trip was for pleasure.
Gabriel travelled to the Chinese capital from San Justo, a city on the suburban edge of Buenos Aires, for one specific reason. He has cerebral palsy, and in China he visited the Wu Stem Cells Medical Center, where he underwent a series of experimental procedures.
Journeys like this, and treatments like this, are not cheap. The Santoro family had to raise tens of thousands of dollars to pay for Gabriel’s visits to the Wu center. But they are not alone: Hundreds of children from Argentina, and many more from around the world, have made the same pilgrimage. Local media is well aware of these trips — indeed, slogans cheering along their fundraising campaigns are everywhere in newspapers and magazines: Go for it Santino! Everyone is rooting for Lola! Each campaign tells a different story, but each is ultimately about the same things: a child with a heart-wrenching condition, a family that craves a cure, a cutting-edge treatment that is only available in China.
And money. Lots and lots of money.
GABRIEL’S FAMILY IS MODEST: He lives with his mother, Alejandra, his father, Guillermo, and his 12-year-old sister, Milagros. Their home occupies two floors above the San Justo mechanics’ shop where Guillermo works. There is no doorbell. Everything looks unfinished because everything is unfinished: the walls, the floor, the rooftop — the house is incomplete, a work in progress.
The first time I visit and sit with Alejandra, the entire interview takes place with Gabriel in her arms. She doesn’t let go of him for a second, not even to answer the phone.
Gabriel’s palsy is profound. When he was born on March 8, 1996, he was immediately admitted to the hospital’s neonatal intensive care unit. The doctors diagnosed cerebral paralysis caused by cyanosis of the mucous membrane, apnea, and hypoxia. Put simply, Gabriel’s body had been starved of oxygen, and the parts of his brain that control his muscles had been damaged.
Alejandra prepares Gabriel’s meal.
From the moment he was born, Gabriel needed help. He couldn’t eat because he didn’t have a sucking reflex. His entire body was stiff. He couldn’t move.
Today, the amount of medical equipment on which Gabriel depends is remarkable. In the living room there are oxygen tubes; beside his bed there is a kit to measure the amount of oxygen in his blood. On the table, there is a device that sucks mucous from his windpipe, a task made necessary by his recent tracheotomy. Without it, he could choke to death.
I watch as Gabriel takes a meal: a fresh peach smoothie, mixed with milk and a cocktail of drugs, administered through a tube connected to his stomach. Alejandra fills the tube with a giant syringe.
“The doctors told me that there would be other complications, more and more problems, that we had to be resigned to it,” she says while she refills the syringe. “They told me we had to understand Gabriel would have an expiry date, like a carton of milk.”
Alejandra has never believed these prognoses. Nor has she ever accepted the idea of an expiry date. She cannot explain whether it was faith or willpower; she just remembers what she said to Gabriel when he was born.
“I promised I would bring him up,” she says. “I didn’t know what would happen. Nothing was certain. He was a newborn baby.”
Over the years, Alejandra has tried everything she can to improve his living conditions, constantly investigating new treatments and following the latest medical progress and cutting-edge research. As the years went by, she collected every scrap of hope she could. That was how she came across stem cells.
She remembers how she began to get excited one night as she watched TV. As she tells me, Gabriel’s eyes are glued to the screen. It’s his favorite show, The Simpsons.
“One evening I was watching the Discovery Channel and I saw that they were making skin from stem cells. I nearly had a heart attack,” she recalls. “I said to myself, ‘Well, that’s the first step.’ Then I saw that Brazilian scientists had made a human heart from stem cells. ‘Wow,’ I thought. ‘I didn’t realize they were doing that.’”
That was when Alejandra decided that Gabriel needed stem cell treatment.
EVER SINCE THEIR EXISTENCE was first proposed by Russian scientist Alexander Maximow in 1908, stem cells have been viewed as a potential miracle treatment. They are blank slates and shape-shifters: cells that can become other types of cells. With the right chemical prompts, a stem cell can transform into the building block for hair, or heart muscle, or bone, or skin. This makes scientists extremely excited about their potential for medical use.
Many hope, for example, that a person with heart disease could receive an injection of stem cells that would replace the damaged heart tissue. Others believe the cells could replace a cancerous tumor in the liver, or even repair a damaged spinal cord, or even build new organs from scratch. The more extreme possibilities regularly grab the media’s attention, for instance when Dutch researchers turned muscle stem cells from a cow into a “stem cell burger” in August 2013 (verdict: edible, but lacking in fat and flavour).
The potential of stem cells, though, is hampered by the fact that they are hard to work with. Some have inherent limitations: By the time we reach adulthood, our bodies contain relatively few stem cells, and, if harvested, they typically specialize into cells used by the organ from which they came. Those from bone marrow, for example, typically differentiate into blood cells and platelets. Stem cells from the brain, meanwhile, turn into the neurons and astrocytes that make up the brain and spinal cord.
Others are more flexible, but controversial. Those found in early human embryos are capable of turning into any type of cell, but because they require destroying the embryo, they have become very contentious — particularly in the United States, where legal restrictions on use of the cells has slowed progress.
Despite these problems, clinical trials of stem cells therapies are taking place around the world. There are three for cerebral palsy in the United States alone. In one study, based at Duke University, researchers are using stem cells extracted from the patients’ umbilical cords. The cells are injected back into the child’s blood, in the hope of reducing inflammation in the brain, or encouraging the brain to repair some of its damaged neurons. But because the treatments haven’t been proven safe or effective, they aren’t yet available commercially.
Clinics that try to skate around these restrictions can be shut down: In recent years the Federal Drug Administration has shuttered one clinic in Colorado and one in Texas, where governor Rick Perry — Bush’s ultra-conservative successor — received an experimental stem-cell injection for back pain.
Many patients and their families, understandably desperate for treatment, see Western regulations as cutting them off from hope. The rules are intended to ensure that patients only receive genuine, helpful treatment. But that means that unproven cutting-edge treatments are only available to those who can travel to countries such as India and China, where regulations are more lax, and stem cell therapies are offered at many hospitals and clinics. And so, like Alejandra and Gabriel, they save up their money and go abroad.
AFTER WATCHING THE STEM CELL documentary on TV, Alejandra started her quest by turning to the Internet.
There are a few clinical trials of new stem cell therapies taking place in China, but commercial treatments are restricted in Argentina — as they are in most of the world — so going international was her only option. It didn’t take long before she came across the Wu Clinic. The website featured the image of a complicated-looking operating theater, with the face of Dr. Like Wu, the founder, half-smiling out at her. Her eyes lingered over a sequence of photos of children who reminded her of Gabriel. She clicked.
A week later a confirmation arrived in her inbox: A message that said, yes, there was a possibility that the Wu Clinic could treat Gabriel. She was asked to send all of his medical records. Things moved fast: within weeks, they had a quote and a potential date.
The Wu clinic offered Gabriel a program of four stem cell implants, at a rate of one per week. The service included lodging for him and two companions, laundry service, hospital services, medical equipment, and the medication that would be required while he was at the clinic.
“When they said to me that it would be $30,000 per treatment, I nearly dropped dead,” says Alejandra. “I told them that I didn’t have this sort of money. I went white from the start, because I knew I would have to rely on people’s sympathy. I don’t think they understood what this meant.”
Still, the size of the bill wasn’t enough to put her off.
ALEJANDRA BEGAN BY ASKING for help from local people. Soon she was organizing raffles. It all felt like a strong start, but when she got home and counted the money they’d raised she realized how far there was still to go.
“I put the money right here on the table and started counting. We’d raised a thousand pesos ($150). I was gripped by a terrible despair, thinking ‘I’ll never get there, never.’”
Then the desperation turned into an idea.
At the time, recycling companies were paying 2.50 pesos per kilo for plastic bottle tops — about 17 cents per pound. Alejandra spotted an opportunity. She made flyers with pictures of Gabriel’s face and the message “Gabriel needs you, we’re collecting bottle tops.” She added an email address, and took the leaflets around to local schools. Then she set up a Facebook account in his name and waited. Soon, the mechanics’ workshop was full of huge bags of bottle tops. Five or six big bags arrived each week. Soon they were coming from all over, not just locally. There were bags from the northern city of Santiago del Estero, from the southern city of Caleta Olivia, even bags from Colombia and Paraguay. She found herself on one of the country’s most popular daytime TV shows, Intrusos, explaining her story to celebrity host Jorge Rial.
She takes out hundreds of bank deposit receipts and shows them to me, reading the names written in pencil on the back. She displays the balance slips that she would go and get from the Banco Provincia in San Justo: Each one shows the total was rising and rising. Within a year the number had passed the magic $30,000. By the spring of 2012, they were ready to travel.
WHEN THE MOMENT CAME IN March 2012, Guillermo, Gabriel’s father, had to stay in Argentina, working to keep the family afloat. So Alejandra and Gabriel were joined by his godfather, Hernán. Their journey started at Ezeiza airport in Buenos Aires, with stops in São Paolo, Brazil, and Doha, Qatar. It took them 28 hours in total: Twenty-eight hours for Alejandra with a child in her arms, an oxygen pack beside her and the breathing equipment that Gabriel’s recent tracheotomy required under the seat.
Eventually they touched down at Beijing airport. Waiting for them was a representative of the Wu Center, who immediately took them to the clinic.
As soon as Gabriel was admitted, the doctors examined him, giving him an electrocardiogram to measure his heart’s health, taking his blood-oxygen saturation levels, checking his vital signs. Then they took him and his family to their room, and introduced them to a punishing routine that lasted nearly a month.
He was put on a drip, and kept on it until the day he returned to Argentina. The labels were written in Chinese, so the family couldn’t understand what they said. But from what Alejandra could tell, the contents of these bags — each about the size of a small soda bottle — were made up of medicine, stem cells, minerals, and vitamins. Gabriel was given six every day, for 25 days.
Alongside the drip came rehabilitation. An occupational therapist, a physical therapist, and a speech therapist were drafted in. Unlike the stem cell treatments, these sessions were the same as Gabriel had received in San Justo, except for the difference of thousands of miles and thousands of dollars. After a series of sessions, Alejandra spent the rest of the day carrying out exercises with her son, and although she was allowed to leave the facility, the rules forbade her from taking Gabriel outside. In the end, there was no respite for either of them, no tourism, no Tiananmen Square, no Great Wall of China.
“Being in China isn’t fun,” says Alejandra. “You’re far from home. The food isn’t the same, even when you buy the same ingredients. The meat is horrible — it’s inedible. On the first night I cooked some food, we washed, and we went to bed. That was all we could manage.”
It was gruelling, and there were no signs of improvement after the first treatment, but Alejandra was a believer. They continued their fundraising efforts throughout the next year — raising nearly $80,000 by this point — so that they could repeat the trip in 2013. The second time around, it was more of the same: a month of injections and exercises, seven days a week.
And then, suddenly, she spotted an improvement.
“I sat him down, and one morning he remained seated on his own,” says Alejandra, with tears in her eyes. “I was amazed. One day I let go of him and he sat up alone. I couldn’t believe it. I never let go of him in the past because he falls and, bang, hurts himself. He doesn’t have defense reflexes, and it will be a long time before he does … if he ever does. But I will not resign myself. I want more. Because I know what he can give.”
She pauses and strokes Gabriel’s hair. “If only this had happened sooner for him. Maybe he could have done better.”
There hasn’t been a single controlled clinical trial anywhere in the world that has published proof that stem cell therapy is effective for cerebral palsy. It’s still too early.
DOCTOR LIKE WU IS THE chief neurologist and managing director of The Wu Stem Cell Medical Center, which claims to have representatives all over the world: Indonesia, Iran, Iraq, South Korea, Malaysia, Oman, and Russia, among other countries.
According to the literature on their website, Wu Stem Cells Medical Center treats various physical conditions using stem cells, including Parkinson’s disease, multiple sclerosis, ALS (Lou Gehrig’s disease), cerebral palsy, Batten disease, muscular dystrophy, cerebellar ataxia, strokes, epilepsy, encephamyelitis, and Alzheimer’s. Its latest launch is a series of anti-aging therapies.
Contacting the center isn’t difficult. You fill out a form with facts about the patient, select the illness you want information about, and press send. The Wu clinic claims to have treated more than two thousand patients since 2005.
Among them was Paula Agustina Torres, who made the trip in November 2009. Paula lived about 20 miles from Gabriel in a city called José C. Paz, and had lipofuscinosis, also known as Batten Disease — a rare disorder of the central nervous system that is hereditary and fatal. The symptoms appear early in childhood: sight problems, convulsions, learning difficulties, dementia. Those with the condition see their mental capabilities and motor skills deteriorate, and most don’t reach their twenties.
Paula was 15 when she first travelled to the Wu Clinic. Her parents, a teacher and a bus driver, raised $37,000 to take her there for a series of experimental stem cell treatments.
Two years later, Paula was dead. Her sister published a harsh post about the experience on the social network Taringa! — a Latin American equivalent of Reddit.
“You go there with high hopes, only to discover nurses who don’t know how to take blood, doctors who don’t seem to be real doctors, and too many drugs given to the patient,” she wrote. “It’s very expensive and they use children like guinea pigs, testing hundreds of drugs on them.”
Paula’s parents had been introduced to the clinic through the family of Alexia Tamara Godoy, another Batten Disease patient. Having started suffering seizures aged four, Alexia had been diagnosed with Batten in 2005, and had deteriorated physically by the time she became one of the first Argentinians to travel to the Wu clinic. She made two trips, one in 2009 and another in 2010, having received the same promises about treatment as Paula and the rest, and having raised $60,000 in donations to pay for her course of treatment. She died last February, aged 17.
Gabriel’s case is first on the Wu center’s list of patient studies. There is, however, no mention of Paula or Alexia on the clinic’s website.
THE WU STEM CELL MEDICAL CENTER makes extraordinary claims about the success of its treatments. Of the 256 cerebral palsy patients the center claims to have treated, nearly all see “improvement”, while an astonishing 89 percent see what it calls “significant improvement.” The clinic’s claimed success rate with other conditions is equally impressive: The majority of patients with conditions such as autism, Parkinson’s, epilepsy and diabetes all see major improvement.
Unfortunately, there hasn’t been a single controlled clinical trial anywhere in the world that has published proof that stem cell therapy is effective for cerebral palsy. It’s still too early. “These places give out treatments as though they were approved, and had passed all the stages of clinical research — but that is not the case,” says Fernando Pitossi, head of regenerative therapy at the Instituto Leloir in Buenos Aires. Most evidence is anecdotal, even if medical facilities like the Wu clinic pass it off as hard science to parents who are desperately seeking treatment.
In 2011, Dr. James Carroll, the vice-chair of the department of neurology at Georgia Regents Health Center , authored an article for the journal Expert Opinion on Biological Therapy. In it he was empathetic toward parents, but straightforward about the data: “There is no evidence as yet that stem cell therapy works in a chronic model of injury, as would be relevant to cerebral palsy.”
The lack of data hasn’t stopped the rise of stem cell clinics. In 2009, a survey by the journal Nature found more than a hundred Chinese clinics offering various stem cell treatments. Most of them appear to still be operating today. The largest, Beike Biotechnology, now offers treatments at 30 hospitals, and claims to have treated more than 9,300 patients — at an average of $26,000 per procedure.
The Chinese government’s attempts to stop these unproven therapies have been alternatively toothless or entirely unenforced. In May 2009, it passed new regulations requiring government approval of stem cell therapies and clinical trials; in January 2012, another rule required all organizations working with stem cells to register with the government. Yet just as many centers seem to be operating. One clinic was even claiming false connections to Harvard Medical School, the University of California, Irvine, and Peking University Stem Cell Research Center as a way of bolstering its medical reputation.
When pressed, doctors at Chinese clinics say they to want to administer trials, but lack the money to do so. Yet until their work appears in peer-reviewed journals, their treatments will remain essentially mysterious. As cell biologist Duanqing Pei, director general of the Guangzhou Institute of Biomedicine and Health, told Nature: “I can understand why they wouldn’t want to do a trial. They might spend millions of dollars to prove that the treatment isn’t effective.”
Even scientists who believe in the possibility of stem cell therapies are concerned about the treatment being offered by unregulated clinics.
Dr. Joanne Kurtzberg is a director at Duke University Health System, and one of the researchers working on the university’s cerebral palsy trial. She says that unregulated treatments can be unsafe, and cautions parents to ask questions about the source of the cells, whether they have been tested for HIV or hepatitis, and if they are being injected into spinal fluid or the brain — where one error could cause a serious infection.
Even when treatments are safe to deliver, that does not mean they are effective. “If they’re giving donor cells in the blood and don’t immune-suppress the patient, the cells won’t even stay in the body for a few hours,” Kurtzberg says.
In extreme cases, unregulated stem cell treatments can have unexpected, dangerous side effects. In 2012, an American woman in her 60s paid $20,000 to have her own stem cells injected into her eyelids as part of an anti-aging treatment to rid her of crow’s feet. After three months, she began to feel a click whenever she blinked. When doctors investigated, they couldn’t believe what they were seeing: Bone had grown in her eyelids.
As for selling hope to older cerebral palsy patients, Kurtzberg believes that the youngest patients — the ones nearest to the time when the initial injury occurred — are the ones who have the best hopes of seeing improvement.
“Based on the work we’ve done… the younger they are, the better,” she says. “If you take a kid who had a stroke in utero, and then look at treating them [at] age 20, my hunch is that the cells won’t be doing much.”
Kurtzberg’s trial, the most advanced in the world, is collecting valuable data on the effectiveness of stem cell treatments. But it won’t be completed until 2015, and a pair of other similar studies will take years to complete: Until then she is very cautious about the results. The gains that unregulated clinics claim, she suggests, could be due to the patients getting older, or to other treatments like speech or physical therapy. And that brings into question the treatments at Wu, which claims high rates of success.
MATTER contacted the Wu Clinic to ask them about their treatments and their claims about effectiveness. The clinic was also asked to address the claims made by the family of Paula Torres, and to explain their procedures for taking on new patients. Getting an answer from the clinic is not, however, as easy as getting an appointment there. Despite repeated attempts to get answers, the clinic did not respond to requests for comment.
TO MANY, HOWEVER, THE QUESTION of scientifically-proven effectiveness often seems not to matter. Whatever results Kurtzberg and others find, it is hard to believe that patients and their families would stop seeking out therapies. After all, hope is a powerful thing.
Gabriel and Alejandra went back to China last spring. The day before they left, doctors at the Wu clinic told Alejandra that they would probably have to visit a third time — and would have to pay another $30,000. The news knocked her sideways, but the Chinese professionals told her that Gabriel had to return because they were so surprised by the improvement he showed. That was enough for her.
On the way to the airport for the flight home to Argentina, Alejandra thought about the money she didn’t have — and still doesn’t have. But she couldn’t forget the moment her son had sat on his own for the first time.
“I don’t know how I will do it, but I will do something,” she told me. “Whatever happens, I will take him, because his life is worth it. Any little thing, be it 1 percent or 50 percent, is a lot. This treatment works. Stem cells work. I’m telling you because, without a shadow of a doubt, it was the stem cells. Gabriel has had the best therapists ever since he was born, and in 16 years he never sat up. It was the stem cells.”
Alejandra takes out the tube that she uses to feed Gabriel, and gives him lunch. For the first time during our time together, she lets go of her son. Then she lifts him on to the mattress that sits in front of the TV, where he spends most of the day.
She shows me to the door.
“Remember, we accept donations,” she says. “If you know any famous people, send them here.”
This story was written by Andrés Grippo, with assistance from Patrick Doyle, and edited by Bobbie Johnson. It was translated by Susie Gordon, fact-checked by Kyla Jones, and copy-edited by Tim Heffernan. Jack Stewart narrated the audio version, and photography is by Nestor Barbitta. It was produced in partnership with Materia.