Stem cell tourism
People are travelling the world and spending a small fortune on unproven stem cell therapies that are illegal in Australia. Clinics in some countries offer stem cell injections to treat diseases that are otherwise considered incurable. The science is moving quickly but the process of ensuring safe and effective treatments takes time and a lot of money. In the meantime untested therapies pose major risks to patients and to the future of research. Reporter: Ian Townsend.
Hover your mouse over the image to read the caption.
- Image: Brain cells generated from induced pluripotent stem cells that were developed from skin cells from a child with Ataxia-telangiectasia. (Australian Institute for Bioengineering & Nanotechnology, University of Queensland)
- Image: In their laboratory at the Australian Institute for Bioengineering & Nanotechnology (Australian Institute for Bioengineering & Nanotechnology, University of Queensland)
- Image: Their research aims to unravel links between cancer and stem cells. It’s important because it contributes to understanding how cancer originates. (Australian Institute for Bioengineering & Nanotechnology, University of Queensland)
- Image: Chief Executive, Mesoblast (Ian Townsend)
- Image: Prof Peter Currie stands amongst his 150,000 zebra fish at the Australian Regenerative Medicine Institute. (Ian Townsend)
- Image: Prof Elliott works at the Australian Regenerative Medicine Institute at Monash University (Ian Townsend)
- Image: Debbie and Renee's children were born blind. (Ian Townsend)
Jonathan Green:Stem cell tourism: it’s a rapidly growing global business. And such is the hope and expectation around the potential of stem cell treatments that people are willing to travel the world and spend a small fortune on therapies. Most of the treatments are unproven and would be illegal in Australia, and, as Ian Townsend reports for Background Briefing, they pose major risks for patients and for the progress of stem cell research.
(Sound of kids playing)
Ian Townsend: As kids play in the background in a house in an outer suburb of Brisbane, their mothers are having morning tea. Renee Hyde and Debbie Peat are planning their next trip to China.
Debbie and Renee are among a growing number of ‘stem cell tourists’. They’re taking their children, Tasha and Jayden, to China for an injection of stem cells, a treatment for a disease that Australian doctors have told them is untreatable.
Renee Hyde: Tasha’s got optic nerve hyperplasia and cerebral palsy and severe developmental delays.
Debbie Peat: Jayden’s got optic nerve hyperplasia or septo-optic dysplasia, so he has very little vision, so his optic nerves haven’t grown properly.
Ian Townsend: Both Tasha and Jayden have been blind since birth, and Debbie and Renee have been doing everything they can to raise money for a treatment that’s illegal in Australia.
They’ve been running raffles at the local pub, hosting fundraising breakfasts and dinners, and telling their stories to the media. That’s where Renee first heard Debbie talking about China and a treatment she didn’t think existed.
Renee Hyde: The doctors here in Australia had always told use there’d never ever be a treatment so she’s going to be like that for life, you’re never going to be able to fix her. And it was only when I saw Debbie’s story on the news that I went, ‘Oh! There’s a treatment!’ So I got on to Debbie the next day after doing a whole night of research. I was still iffy on it, and I did like six months’ research trying to figure out if it was the best thing for Tasha. And then I raised $60,000 as well and took Tasha to China. And within her third treatment she definitely had light perception in her left eye and she would squint when the light that we’d shine a torch in her eye and things. And she rambles on in baby talk heaps now, whereas she wouldn’t even attempt before. So I know her speech is going to come along soon.
Ian Townsend: Renee’s daughter, Tasha, is now 12 years old. Debbie’s son, Jayden, is six. The treatments they’ve both received involved intravenous injections of stem cells mixed with some traditional Chinese medicine.
Renee Hyde: What they said is the stem cells will travel to what part of the body the body feels needs it the most, but Tasha also had acupuncture as well, so she had acupuncture in her legs, she had electro-wave and acupressure and she had acupressure in her legs, so they were trying to get it to go to all over her body rather than just her eyes.
Ian Townsend: Stem cells have the potential to repair parts of the body. The isolation a decade ago of embryonic stem cells, which can turn into just about any cell, raised the possibility of replacing worn-out organs with new ones.
Five years ago, a Japanese researcher managed a new trick: turning adult cells back into stem cells that could do much the same thing. It sidestepped the controversy of using stem cells from human embryos and meant we could grow skin, bone, blood, nerves and tissue that our immune systems wouldn’t reject.
It’s called ‘regenerative medicine’ and hundreds of labs around the world are now feverishly working on treatments for many diseases, from cancer to kidney disease, cerebral palsy to spinal cord injury.
There’s been a lot of hype, but getting treatments to the public has been painfully slow. A big demand has been building and some clinics have been jumping the gun by offering desperate people unproven stem cell injections.
The director of the Australian Regenerative Medicine Institute is Nadia Rosenthal.
Nadia Rosenthal: The concept of stem cells is quite a magical one and even scientists fall under the spell of the idea that there might be a cell that could be used to sort of cure this and cure that. It’s a bit like when you go into Bunnings and you see this thing that says you can, you know, wash your floors with it, you can use it as a mouthwash, you can shampoo, and give it to your children at night-time.
But that’s about the level of absurdity that we’re dealing with when it comes to some of these claims about stem cells. It’s just not as simple as that. We are not a robot with four different moving parts. There are at least 500 different cell types in our body and every single one of those has been very carefully crafted out of the initial fertilised egg.
Ian Townsend: Repairing damaged organs and nerves isn’t as simple as injecting stem cells into the bloodstream, but that’s what many clinics are selling, for thousands of dollars a treatment. To treat his blindness, Debbie Peat’s son, Jayden, was injected with someone else’s cord-blood stem cells.
Debbie Peat: It comes from umbilical cords from Chinese mothers and they do lots of testing: they do testing in the hospital and they do testing before they put it into the bags and everything, so…
Ian Townsend: They’re stem cells from cord blood?
Debbie Peat: Yes, yes. He had it through IV. We did one lumbar puncture, which wasn’t the best for him because he’s so young and he had to be put under. But we just did one lumbar and that was it—we weren’t doing it anymore—so he just got them done through IV.
Ian Townsend: Go on the web and type in a disease plus the phrase ‘stem cells’ and up will pop plenty of treatments, if you’re prepared to take a risk and fly to Asia or South America.
Nadia Rosenthal from the Australian Regenerative Medicine Institute:
Nadia Rosenthal: You ask then why has it taken off like this, why is there this sort of viral spread of information that stem cells are somehow going to be the be all and end all, and the answer is because everybody wants an answer. I mean, you know, everybody wants a cure; everybody wants to think that we’re at the brink of doing something good for humanity.
And scientists have all the best interests in the world to make that happen, but sometimes they step beyond where they really can uphold their claims, and that’s where I think we’re being irresponsible if we say that, for instance, stem cell therapy is going to help with a number of different diseases in a way that sort of is as simple as simply injecting some cells.
(Excerpt from advertisement: ‘We are offering competitively priced stem cell treatment for a wide range of diseases…’)
Ian Townsend: Which is what most of these clinics advertising on the internet offer, in places such as China.
(Excerpt from advertisement: ‘…using mesenchymal stem cells derived from umbilical cord tissue. These are adult stem cells. All patients are also treated to three or four days and nights of tourism to Hong Kong and Macau…’)
Ian Townsend: We have attempted to contact, without success, the organisation that provided the stem cells for the treatment of Debbie and Renee’s children, but we’ve put links to some of these clinics and the treatments they offer on the Background Briefing website, so you can make up your own mind.
Think of any disease and many of these clinics claim they can treat it. The fact is that there are very few proven stem cell treatments for any disease anywhere in the world yet.
Adelaide neurologist Simon Koblar has treated more than a dozen people who’ve had stem cell therapies in clinics overseas.
Simon Koblar: I’ve had one patient that actually went to Germany with a company that was actually shut down shortly after she came back. And she thought she was being given stem cells from her bone marrow for her neurological disease and in fact she arrived on my doorstep a week after and in fact I could find no results in our tests to indicate that she’d been given any stem cells at all.
Ian Townsend: And in the other patients he’s seen, there’s been nothing to make Simon Koblar believe their stem cell therapies actually worked.
Simon Koblar: Most times, the person says that they feel better and certain things seem to work better, but I’m… objectively as a neurologist I can’t say that they’ve thrown their walking stick away or that they’ve categorically gone from complete loss of one function to gain it. So that’s the difficulty in medicine. There’s a placebo response, so if I give someone a sugar tablet and I say, ‘Look, this is going to cure you,’ then there can be a significant improvement because of the person’s hope.
Ian Townsend: On the other hand, there have been several deaths overseas linked to stem cell therapies. The most clear-cut case was a boy from Israel who had ataxia telangiectasia, a rare degenerative disease. Simon Koblar:
Simon Koblar: His family took him to Russia and he received stem cell treatment and then a couple of years after, he then developed tumours throughout his brain and spinal cord. And they were biopsied and found to actually arise from two different human beings different to him. So he was actually given treatment that was from two individual people.
Ian Townsend: In other words, he’d been given stem cells from two other people.
It doesn’t take many injuries or deaths from treatments to give an entire field of medicine a bad name, and this is the big fear of researchers around the world. The projects leader of Stem Cells Australia is Martin Pera.
Martin Pera: Yes, I think the existence of these clinics and their practices have the potential that leads to bring the entire field into disrepute. And that is one reason it is such of a concern to us, let alone our concerns for the patients who are maybe going to attend them.
Ian Townsend: The International Society for Stem Cell Research says some of these overseas clinics use cells from human placenta, which aren’t stem cells but placenta cells. One company reportedly uses the foetal organs from rabbits.
The stem cells that Debbie Peat and Renee Hyde’s children received were reportedly from umbilical cords. Scientists say cord stem cells are certainly useful for some diseases, but there’s no evidence they can treat septo-optic dysplasia, which is the cause of Jayden and Tasha’s blindness.
Despite what the scientists say, Debbie and Renee believe that the treatments did do some good, and so they’re planning to go back to China. The treatments for their children cost them more than $30,000 each plus airfares, and like many others they set up charities to help them raise the money.
Renee Hyde: We would have been back now, only I got really unwell and wasn’t able to fundraise to take her and now we have to move. So after I move I’ll get back into fundraising and we’ll be back for sure.
Ian Townsend: Well, you’ve set up a charity I think, was it?
Renee Hyde: Yeah, it was ‘Tasha’s Hope for Sight’ and, yeah, I’ll just continue that on. Debbie had one as well: hers was ‘Jayden’s Quest for Sight’.
Ian Townsend: Is it easy to set up a charity? How does that work?
Debbie Peat: Um, you have to go through the Office of Fair Trading and get a sanction to be able to fundraise. And normally it’s a six-month by six-month period and then you have to do all your audit and everything like that at the end so they know that you haven’t used it for anything else. It is really easy, like, to get one. You just have to do it the right way.
Ian Townsend: You have to tell them what you’re doing and you have to explain to them…
Debbie Peat: Yeah, explain what you’re doing and you have to write down like…
Renee Hyde: And have letters from the hospital and things as well, to prove that that’s you’re going for and…
Ian Townsend: So you wrote to the hospital and they sent you a letter…
Renee Hyde: No, we emailed off to the hospital and they accepted our children and once we got the acceptance letter we sent that off to Fair Trading with our sanction information.
Ian Townsend: Fair Trading Queensland can give people what’s called a ‘sanction’ to raise money for charitable purposes; in this case, to send a child overseas for a treatment that’s not available in Australia.
The reason why this treatment for septo-optic dysplasia isn’t available in Australia, though, is because it’d be illegal here. There’ve been no registered clinical trials anywhere in the world that prove that this particular treatment works for this disease.
There are lots of registered clinical trials underway for things like heart damage, some brain diseases, and arthritis, and we’ve put a link to a list of them on the Background Briefing website.
That’s the frustrating bit. People with terrible and sometimes fatal diseases are wondering how long they’re going to have to wait for treatments they’re told are coming. You only have to go to one of the many regenerative medicine labs to hear what might be possible. At a lab inside the Australian Regenerative Medicine Institute in Melbourne, Dr David Elliott describes the work that’s being done to build a human heart.
David Elliott: The classic experiment in the field is by a group in America where they actually removed the cells from the heart—they decellurised the heart—and what was left is what they call the ‘extracellular matrix’, so the bits between a cell. And they seeded that with cardiac cells derived from embryonic stem cells into that and actually it reconstituted a contracting heart in culture: an amazing experiment.
The problem is it didn’t make all the other bits that are in a heart. So it made the muscle, but it didn’t make vessels. But it actually was in the culture and it was contracting right. So if you had the right scaffold, you can grow the right organ. And I think that the same is true for all organs.
Ian Townsend: David Elliott works for the Australian Regenerative Medicine Institute and his specialty is human hearts. Here in a petri dish under a microscope he’s happy to show something truly amazing: lab-made human heart cells, beating.
David Elliott: Here we go. They should be still beating. They get a bit cold, they slow down a bit, but we’ll just have a look. There you go: they’ve slowed down a bit but these were beating around 60 beats per minute, so if you have a look down the scope there you can see them contract in a circle around the… just see them beating.
Ian Townsend: Oh yes. They’ve slowed down a bit, haven’t they?
David Elliott: Yeah, they have slowed down. They don’t like the cold; they like 37.
Ian Townsend: Neither do I… why am I in Melbourne? So these are heart cells?
David Elliott: Yeah, these are heart cells. So these are cells we’ve taken from embryonic stem cells.
Ian Townsend: It does make you think that anything’s possible, but ‘regenerative medicine’ is still in its infancy. No one’s even sure how regeneration works and exactly what role the stem cells play.
Helping solve that mystery is a special kind of fish. In the basement of the Australian Regenerative Medicine Institute are 150,000 zebrafish, a species that can regenerate just about any part of their body.
Because it takes about 7000 fish tanks to hold them all, they’re too heavy to put just anywhere, and so they’ve been put in the basement. The institute’s deputy director Peter Currie is taking us down there to have a look.
Peter Currie: Right, so we’re going down into the basement, because the waterways of the tanks of the zebrafish facility can only be housed on the ground floor. So we’re in one of the older buildings, which when we generated the fish facility we literally took everything out of it—it was a dusty old basement, they had mad chickens running around here because they did chicken psychology.
Ian Townsend: Chicken psychology?
Peter Currie: Apparently so. I never saw the chickens, but they were famous. And refitted all for our fishy friends.
Ian Townsend: It smells a bit fishy.
Here, they’re looking at how fish can regenerate a spinal cord that’s been severed, hoping to find a clue about how it might be done in humans. We’re standing in front of a tank where the small fish are glowing green, and Peter Currie explains they’ve been genetically modified and have jellyfish proteins to show up the stem cells.
Peter Currie: And it’s so powerful that this particular sequence it’s driving the expression; we don’t actually need fluorescent light to see a protein, so they’re this beautiful chartreuse colour in this transparent animal.
Ian Townsend: So is it because they’re chock-a-block full of stem cells?
Peter Currie: That’s correct. They’re chock-a-block full of stem cells and this particular promoter or piece of DNA is driving such a high level of expression of this protein—it’s actually a jellyfish protein—that we can see them active in the living animal.
Ian Townsend: You can cut pieces off this fish and they’ll grow back, even the heart regenerates.
Peter Currie: For instance, the zebrafish, you cut its heart and within a month it will fully regenerate. And obviously that’s a capacity we don’t have and of course if we could engender the ability to regenerate heart tissue, that would be a solution to one of the major causes of morbidity in the western world.
But what’s been an interesting finding recently is that the mammalian heart can regenerate within the first week of life. So that is a significant milestone, that all the genes and all the genetics involved in regeneration are there; if we could somehow just tweak it slightly, then we might be able to engender a similar regenerative capacity as adults.
Ian Townsend: There are number of theories as to why these fish can regenerate and humans can’t, but no one’s really sure.
Back upstairs, the director of the Australian Regenerative Medicine Institute, Nadia Rosenthal, says it appears we do have the ability to regenerate; unlike fish, we just don’t use it anymore.
Nadia Rosenthal: The question is whether it’s just because they’re them and we are us, whether fish are just a different thing altogether—different kettle of—and we are in fact more advanced, and we have big brains and we have fantastic immune systems and we have Medicare. That may all be true, but the bottom line is that we can actually—if we trace our origins back to when we were in development—we can regenerate as well as these other organisms. So genetically we haven’t lost the programs, but we shut them down. And so I would like to know why that is and if there’s a way to reactivate those programs without causing further damage or cancer, for instance.
Ian Townsend: There are still potential dangers with regenerative medicine, because we simply don’t know enough about it yet. Nadia Rosenthal:
Nadia Rosenthal: Putting cells back into your body can have some very adverse effects. We all know what happens if you’re very allergic to something—you can go into anaphylactic shock and die. Cells are foreign bodies; you put them back in and even if they’ve been out of you for a while, they may be not appropriately handled, they may run haywire, there are just all sorts of reasons why this is a risky thing to do without appropriate information and controls. And those controls are still in the works.
Ian Townsend: They’re still in the works in Australia, but many other countries with fewer regulations aren’t that fussy. Brisbane mother Debbie Peat spent US$32,000 in China on a stem cell therapy for her son, Jayden, who was born blind.
Debbie Peat: Because Australia wasn’t doing it, especially for Jayden’s condition. There was nothing they could do over here. That’s why I decided to look overseas, because Australia isn’t doing anything. Otherwise, I’d rather stay in Australia to get us that type of treatment done.
Ian Townsend: Do you know of any research into the condition in Australia?
Debbie Peat: Ah, no. There’s not much research in Australia on how to cure his condition over here. It’s just something that is, and that’s how it’s going to be.
Ian Townsend: There’s been a lot of hype and a lot of hope for stem cells, but there aren’t many proven treatments anywhere yet. Filling the gap between supply and demand are unproven treatments and a burgeoning stem cell tourism industry.
There is plenty of research in Australia, though, that could lead to a treatment for Jayden’s blindness. In a lab on the other side of Brisbane, at the University of Queensland, Background Briefing’s being shown nerves from part of a human brain, growing like a spider web over a petri dish.
Ernst Wolvetang: (In lab) And you can see these little wires hooking up with each other. And these are not any type of neurons; these are Purkinje cells or precursors of Purkinje cells, which live in our cerebellum and are really intimately involved in relaying messages from our spinal cord.
Ian Townsend: At the Australian Institute of Bioengineering and Nanotechnology, Dr Ernst Wolvetang is hunting for new treatments for diseases, using stem cells.
We heard earlier about an Israeli boy who died after being injected with stem cells at a clinic in Russia. That boy was receiving an unproven treatment for a disease called ataxia telangiectasia, a rare degenerative disease. Ernst Wolvetang says his team may have found a safe way to treat and even cure that disease, but it’s proven to be a lot more difficult than a simple injection.
Ernst Wolvetang: And we’ve already identified neural pathways that are going awry in these children, which gives us leads how we might intervene really early and see if we can make them live longer or, more excitingly, even correct the defect in the stem cells. By going in with what’s called genome editing, you can now change the generic sequence of those children, make stem cells and deliver, for example, neuronal stem cells back into the children and maybe fix the damage in the cerebellum.
We are going to test this in rats first and we have rats, luckily, that have this mutation. But that’s where the excitement is. This is an orphan disease that is very rarely studied, because the Big Pharma companies think like, ‘Well, we can’t make lots of money there.’ But for us it’s a case study of what might be possible in the future.
Ian Townsend: An orphan disease is one that the pharmaceutical industry is unlikely to fund because it’s so rare that it’s not going to give them the return they’re looking for on their investment. The big money is in treating the more common diseases and they tend to be things like heart disease, arthritis, and diabetes. Some things like certain eye diseases, skin grafts and cartilage aren’t as complicated as entire organs, and so they might be easier to treat with stem cells. Trials of treatments for many of these are underway.
Even then, we’re talking years before you’ll be able to go to a hospital in Australia and get a stem cell treatment for, say, a common eye disease like macular degeneration. Ernst Wolvetang:
Ernst Wolvetang: Well, you know, all researchers always say five to ten years and I don’t want to say that, but I’m going to say that. There are still a number of hurdles that need to be overcome and they are not all technical, because the technology is there. They are in what you asked me before about can we make this cost effective, can we do this under very safe conditions, can we make this an off-the-shelf process so that a doctor can do this in his own hospital. And for that you, for example, need nanoparticles that you can just sprinkle on cells, and that’s what we’re working on, and then reprogram cells.
So that’s the technology hurdles that we can overcome in that time period. There are also regulatory hurdles to be overcome; you know, we need to convince our Australian and international regulatory bodies that these are safe and that they do the job.
Ian Townsend: The hurdles are higher for stem cell research because of tough regulations in Australia, the US and Europe after a number of bad drugs slipped through the net in the past. It means more testing for stem cells and more financial risk; a company can spend hundreds of millions of dollars on a trial only to have it fail.
Last year, the big American stem cell company, Geron Corporation, pulled the plug on its trials for spinal cord injury because it was too big a risk financially. One of the world’s largest adult stem cell companies, Mesoblast, is going ahead with other trials—for some heart and brain diseases, rheumatoid arthritis and type 2 diabetes. Mesoblast is based in Melbourne and its chief executive is Silviu Itescu.
Silviu Itescu: The difficulty in the healthcare sector is that you have very stringent regulatory requirements. The regulators, whether it be the TGA in Australia or the FDA in the US or the European regulators, all have very clear expectations that you go through phase one, phase two, phase three clinical trials before a product is deemed to be safe and effective and then approved.
And if you do that, then you’ve got a well-understood duration that goes from pre-clinical discovery through to final commercialisation. And you just can’t cut corners. That takes seven years. Now, the product either fails or succeeds, but you can’t do it in a shorter time frame.
Ian Townsend: The company is about to start human trials for a treatment it says could dramatically reduce death rates after heart attack. Mesoblast has spent $150-million in the past eight years but it still doesn’t have a product. That’s how stringent the rules are now.
But in some cases there are exemptions that allow companies to bypass lengthy trials. The Therapeutic Goods Administration put out new guidelines last year covering stem cells, and there’s an exemption for some stem cell treatments if the cells come from a patient’s own body.
A company called Regeneus already has a stem a stem cell therapy on the market for arthritis and sports injuries. It involves taking fat from a patient’s waist, concentrating the stem cells in that fat, and then reinjecting it into damaged joints. It costs $9000 a treatment. One of the founders of Regeneus is Associate Professor Ben Herbert from Macquarie University.
Ben Herbert: That’s considered to be very low risk and it’s the person’s own material, it’s only minimally manipulated, it’s not grown in culture anywhere, it’s done in a very short period of time and it’s all done in clinic, under the control of a single clinician who has control of the whole process or is instructing people under his control on the various aspects of it. So that type of thing is in an exempt area and that exempt area exists here in Australia and it exists in a number of the jurisdictions around the world.
Ian Townsend: It’s an exemption to the rules governing human trials because it’s considered safe to inject someone with their own cells. It’s saved Regeneus a lot of time and money getting a stem cell treatment onto the market.
Ben Herbert: Oh, true. I think that’s exactly right. But the exemption of course wasn’t written for us; the exemption exists because when you look at what regulators like the Food and Drug Administration in the United States and the EMA in Europe and the TGA here in Australia, they don’t regulate medical practice, what they regulate are drugs and devices, and so this is neither a drug or a device.
Ian Townsend: I suspect it’s contentious, though. Some people might argue that this is in fact if not a drug at least a treatment involving tissues. Is it a matter of splitting hairs here?
Ben Herbert: Um, not in Australia. The regulations are extremely clear here. And of course we’ve dealt over a number of years with the TGA, so they’re very aware of what we’re doing. We’ve had numerous discussions with them and the regulations are very clear.
Ian Townsend: Ben Herbert in Sydney.
In Brisbane, with no Australian-certified treatment available yet for their blindness, Renee Hyde and Debbie Peat are planning to take their children back to China for another course of stem cells, hoping to improve their sight. They’re doing it because they want to help their children and a clinic in China is at least offering some hope.
Debbie Peat: There are so many conditions stem cells can help with.
Renee Hyde: It can even help with autism and things, because there was a little boy over there when we were over there and it was helping him amazingly. So…
Ian Townsend: Are you concerned at all about any safety aspects of what they were doing in China?
Renee Hyde: No, definitely not.
Debbie Peat: I think at the start I was, before I looked into it. And then once I looked into it and how much testing they do with the stem cells before they put them into your child, then it didn’t concern me at all.
Ian Townsend: Researchers, though, are worried about the safety of these clinics. It’d be bad news for the emerging stem cell field if unproven treatments at one of these clinics overseas caused a number of injuries or deaths. A greater disaster for the field would be if people died during a certified trial somewhere and it was traced back to the stem cells they’d been given.
Something similar happened in 1999 to gene therapy, hailed back then as the next big thing in medicine. An 18-year-old American called Jessie Gelsinger, who had a genetic disease of the liver, died from the side effects of gene therapy during a trial. It set gene therapy back years. Scientists don’t want the same thing to happen to stem cells. From the Australian Regenerative Medicine Institute, Nadia Rosenthal:
Nadia Rosenthal: The self-serving concern is that if we have one real stem cell-mediated death that they can pinpoint, that the doctors can pinpoint to the administration of stem cells under circumstances that are considered justifiable—if it was done for instance as part of a widely sort of publicised stem cell trial—and someone didn’t do well, it could bring down the field in the same way that the Gelsinger case did for gene therapy, where a young man died because of an inappropriate dose of genes that should never have been given to him. And it was done under the aegis of a very reputable trial. So that’s the sort of explosion that we would like to avoid for the sake of the patient but it does of course have adverse effects on the research that we want to do.
Ian Townsend: Until treatments become available in Australia, though, desperate people will be still be prepared to take the risk and go to clinics overseas. Debbie Peat in Brisbane is going back to China once she can raise another $50,000 or $60,000 for another treatment for her son Jayden.
Debbie Peat: Oh yes, I’m planning to go back over again once I fundraise some more money and everything like that. So just for one more to see if it helps some more.
Ian Townsend: Did they say how many times you might need to do this?
Debbie Peat: You can stop whenever you want. Like, I know of a few people who have been over three times and four times and they’ve had a lot of success. And that’s why I’m planning to go over there again—just to try and help him.
Ian Townsend: The stem cell researchers in countries such Australia and the US are now stepping up their campaign to warn people of the potential dangers. Dr Jeanne Loring from the Centre for Regenerative Medicine in California has posted on a number of websites the following warning about the potential danger of unregulated clinics in Asia and South America:
Jeanne Loring: If you decide in spite of all the warnings to go overseas and have a stem cell therapy I’m asking you if you will ask the clinic to collect a sample of the stem cells they intend to use. You can freeze it and send it to me, I will analyse it for free, and I will tell you what those stem cells are. And then that will give you some indication about whether those stem cells are going to be dangerous or that they may be helpful to you.
It really breaks my heart to have to explain to people who have critical illnesses—children with autism or parents with ALS—that there is nothing we can do right now to help them. And all I can do is to say please be patient; if they decide they want to do something overseas that they should be extremely careful.
Ian Townsend: The stem cell clinics are fighting back. The International Society for Stem Cell Research started a website to name the clinics offering treatments and published what their success rates were, whether they had ethics committees, what regulations they complied with, and what research and data they published. The society was hit with a barrage of lawsuits from foreign clinics and the site was shut down.
Nadia Rosenthal from the Australian Regenerative Medicine Institute says in the end, people have to make their own choice, but they need to know exactly what they’re getting so they can make an informed choice.
Nadia Rosenthal: It does require something like that, some authoritative voice that can come and say to the public, here’s what is promising, here is what anyone could understand. I don’t think I’ve used any language that any man on the street couldn’t understand—I may have used a few words in there that I’d have to explain, but not that much. It’s not that hard to understand what this is all about as long as you know what a cell is, and if you don’t then you shouldn’t be taking stem cells for some… (laughs). You should know a little bit about what you’re dealing with. And yet that somehow has evaded the public in place of what now is just sensationalism as far as I can tell.
Jonathan Green: Nadia Rosenthal, from the Australian Regenerative Medicine Institute, was ending Ian Townsend’s report for Background Briefing. The coordinating producer was Linda McGinness, research by Anna Whitfeld, technical production by Mark Don and Background Briefing’s executive producer is Chris Bullock.
- Queensland Office of Fair Trading
- How to apply for a sanction to fundraise
- Ian Townsend
- Anna Whitfeld
- Supervising Producer
- Linda McGinness
- Sound Engineer
- Mark Don
- Executive Producer
- Chris Bullock