Stem Cell Tourism: Seeking Treatment On The Internet And Paying For It With Your Life

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"Stem cell tourism" – seeking out unproven and expensive treatments in countries without safety regulations – claims two more victims in China.

Stem cell research has the potential to revolutionize medicine. But while researchers continue to make strides to bring the technology to the clinic, some clinicians are already using stem cell therapies to treat conditions ranging from stroke to diabetes. No, there’s been no long-awaited breakthrough. These clinicians are in countries like Russia, Thailand and China where regulations for cell treatments are lax or nonexistent. Over the past decade thousands of desperate patients who seek out a stem cell miracle as their final option have traveled far, paid large sums of money, and suffered dearly for it. Two recent deaths in China remind us once again about the true price of “stem cell tourism."

Reuters recently reported the story of Hong Chun who had suffered a minor stroke and the neurological damage made it difficult for him to use chopsticks. He went to the Chinese army’s 455 PLA Hospital in Shanghai hospital where the doctors injected his spinal cord and buttocks with what they claimed were donor stem cells. The next day Hong left the hospital, but he didn’t get far. The 27 year old became so sick on the train ride home he had to be rushed from the train to another hospital. He became brain dead and died within a month. Hong had paid 30,000 yuan ($4,800) to the Shanghai hospital for the stem cell therapy. Hong’s father went to Shanghai to find out why his son had died. Administrators told him that his son did not die in their hospital, paid him 80,000 yuan and discouraged him from pursuing matters further. “I can’t get my son back,” he told Reuters. “But people must know about these stem cell therapies and no one must be deceived.”

According to China’s official website for “medial tourism in China,” the 455 PLA Hospital’s stem cell transplantation center continues to be a source of pride – and cutting edge treatment. “The national stem cell engineering...base can transform the latest stem cell research achievement into clinical application. Now the base has operated stem cell transplantation treatment to type 1 diabetes, to liver disease, to solid tumor. Now stem cell transplantations are making much progress in treating diabetes and its complications.”

Fan Hongkun was a woman in need of treatment for liver disease. She was suffering from a chronic hepatitis B virus infection that had pushed her liver to late-stage cirrhosis. “We saw the therapy advertised online and talked to the doctor over the phone,” Fan’s son told Reuters. “He said the stem cells were like seeds, after being planted on a liver, they grow, divide and spread and finally form a healthy liver.” Like Hong, Fan had sought the help of a major hospital run by the Chinese army, the Beijing Military General Hospital. “My mother said the PLA (Chinese army) doesn’t lie. That’s why she trusted them.”

The Chinese army's 455 PLA Hospital in Shanghai.

Prior to receiving the stem cells doctors took Fan off lamivudine, an antiviral medication that was keeping the hepatitis B virus in her body from multiplying. Stopping the treatment, according to the doctors, was necessary to “prepare her for the stem cell therapy.” Fan never received the treatment. Without her medication the virus proliferated out of control. She went into a coma and died. Fan’s family tried to sue the hospital but a Chinese court dismissed the case.

The fact is the vast majority of stem cell trials fail. The only stem cell therapy that has gained widespread approval is hematopoietic stem cell transplantation (HSCT) to treat leukemia. In 2006 there were 50,417 HSCTs performed at 1,327 clinics in 71 countries. The treatment remains a major medical breakthrough. But HSCT became a viable treatment through a painstaking trial-and-error process that spanned decades. The examples above highlight the willingness of people to shortcut that process and exploit the terminally ill for profit or, even worse, a draconian type of experimental program that uses humans as guinea pigs.

If places like China's military hospitals are in fact taking such a barbaric approach to science the implications for stem cell research are hard to predict. On the one hand, they might have hit that homerun and miraculously grown Fan back her liver – whole and healthy and functional. The doctors would be famous overnight, China would be at the forefront of the stem cell world, and South Korea's disgraced Woo-Suk Hwang would grouse at taking the long way. But who knows? It is possible that by skipping clinical trials and testing treatments directly on the desperate China will push past countries that practice incremental, regulation-"hampered" science like the US.

But not if stem cell researchers like Zubin Master and David Resnik have anything to say about it.

Earlier this year the two wrote an commentary in the European Molecular Biology Organization Journal, entitled “Stem cell tourism and scientific responsibility.” They argue that scientists need to take a lesson from the history of cancer treatment abuse. Educating the public and doctors is not going to be enough. The information will not reach patients and doctors. Worse, desperate patients and unethical doctors will too often ignore the information. The onus of regulation, they argue, falls to the stem cell researchers in control of the stem cells themselves and other materials needed for treatment. This approach has great potential as many of the clinics doling out the questionable treatments are small and don’t generate the stem cells themselves. Successfully generating stem cells from embryonic cells or by transforming adult cells is tricky business. It’s a science for which the methodology is still painstakingly being worked out. Because of this, these smaller labs will rely on larger, legitimate labs for the materials.

“...stem cell scientists have a unique and important role to play in addressing the problem of stem cell tourism. Stem cell scientists should carefully examine all requests to provide cell lines and other materials, and share them only with responsible investigators or clinicians. They should require recipients of stem cells to sign material transfer agreements (MTAs) that describe how the cells may be used, and to provide documentation about their scientific or medical qualifications.”

Material transfer agreements are contracts governing the exchange of material between two parties. They will often have explicit guidelines as to how the material can and cannot be used. MTAs are par for the course when labs in the US exchange materials such as rare antibodies or cell lines. One would expect they should be the bare minimum requirement for handing over material that will be injected into patients.

I hadn’t actually heard of “stem cell tourism” until recently. But a quick online search turns up horror story after horror story, like the young boy in Moscow who’d developed tumors in his brain and spinal cord after being injected with stem cells. It turned out that the stem cells were poorly characterized – they not only contained cancerous cells but they were derived from two different donors.

We can only hope that stem cell researchers will take on the extra work of policing the unscrupulous recipients of their materials. A little more work on one end could make for less horror stories on the other.

[image credits: trendhunter and 455 PLA Hospital]
image 1: needle
image 2: PLA Hospital

Peter Murray

Peter Murray was born in Boston in 1973. He earned a PhD in neuroscience at the University of Maryland, Baltimore studying gene expression in the neocortex. Following his dissertation work he spent three years as a post-doctoral fellow at the same university studying brain mechanisms of pain and motor control. He completed a collection of short stories in 2010 and has been writing for Singularity Hub since March 2011.

Discussion — 12 Responses

  • nehopsa October 6, 2011 on 10:44 am

    A decade ago I asked my former fellow student, now a neurosurgeon in London: “The stem cells must be boon for your field, aren’t they? Now you can regenerate any neural tissue you need. I mean almost?”

    His reply? “NOT AT ALL! YOU DO NOT WANT TO INJECT NEURON-TO-BE STEM CELLS TO FIND OUT THEY TURNED BONE OR CARTILAGE INSTEAD. Before you crack this part you want to stay away from ANY tinkering with stem cells [in human patients].”

    This was a decade ago. Obviously nobody cracked the difficult part yet. (See the article above.)

    Only unscrupulous doctors/quacks ply their notorious undertaker trade, as always. They can do a lot of harm to the reputation of all serious, honest and hardworking researchers. They do OUTRAGEOUS BLIND REVERSED [all bullets but one loaded] RUSSIAN RULLET style TRIAL AND ERROR AGAINST STAGGERING ODDS. THEY SHOULD BE IMMEDIATELY REMOVED FROM MEDICAL PROFESSION AND PROSECUTED TO THE MAXIMUM EXTENT OF THE LAW. (They contribute to the “progress” of medicine precious NOTHING.)

    Obviously there was NO disclosure of the risk involved to any of their victims [in the article above]. This is unethical.

    • Ormond Otvos nehopsa October 6, 2011 on 1:14 pm

      And if they disclose all the risks and the patient agrees to go ahead as a guinea pig, you’ll quit trying to run their lives?

    • Ormond Otvos nehopsa October 6, 2011 on 1:20 pm

      Ten years ago, your fellow student was not a neurosurgeon. What does he say now? If stem cells are going to work, experimentation will go faster with humans, properly informed. People who volunteer to be guinea pigs are typically at the end of their reasonable alternatives.

      Who are you to impose your rules on them?

  • Ormond Otvos October 6, 2011 on 1:13 pm

    There\’s a lot of guinea pigs in China. This sounds a lot like the regulations that prevent cannabis experimentation.

    Funny how Singularity Hub publishes this sort of scare article. Let people decide for themselves how they want to die or not.

    SH shouldn\’t become the Catholic Church.

    • Aaron Saenz Ormond Otvos October 6, 2011 on 1:25 pm

      Regulation vs no-holds-barred development is a big debate. Especially in stem cells where the costs can be people’s lives.
      Personally I think there’s a sweet spot that China is probably just to the side of.
      If people, especially terminally ill people, wish to risk their lives and money on experimental treatments, I’m all for it. Hopefully it will work out and they, and the rest of us, will benefit.
      But I think it’s reasonable for medical professionals, in all countries, to do their best to ensure that the experimental treatments have at least some hope of success. Peter’s article highlight how it’s not only the science, but also the organization/lack of oversight, of these treatments which can be dangerous. Again, I’m all for people in need getting access to risky science as they see fit, but they shouldn’t have to face additional risk from a lack of structure and oversight.

    • Peter Murray Ormond Otvos October 7, 2011 on 2:35 am

      Experiments with cannabis are legal…but I assume you use the term loosely.
      Like Aaron, I feel experimental treatments should be an option for the terminally ill. But making that choice should follow full disclosure of the risks involved. From what I’ve read many of these clinics flat out lie about both treatment risks and effectiveness.

  • Joe Nickence October 6, 2011 on 3:09 pm

    Here is a good example of how humanity has built a shell of tech around itself. Healthcare has been called “medical practice” for a reason.

  • Phil G October 6, 2011 on 3:10 pm

    But have they had any successes? Is anyone recording all the cases at this hospital and evaluating their results?

    • Peter Murray Phil G October 7, 2011 on 2:24 am

      Here’s a great article that addresses your question:

      To summarize and give you a short answer: no. Stem cell research is going strong in China. They’re training their people at top-notch overseas institutions and investing a lot of money. But while stem cell labs are making progress, the sort of stem cell clinics I describe above have not contributed to that success as far as I can tell. The labs publish in medical journals, the clinics do not. The labs are in fact very critical of the clinics and there are efforts to tighten regulations for these clinics that are giving China’s stem cell researchers a bad name. Although, if that’s the case, I find it odd that these clinics are run by the military.

  • singbe October 7, 2011 on 3:42 pm

    There needs to be a balance. There are over 3000 clinical trials dealing with stem cells. The 8-10 year process for trials to become practice is antiquated and doesn’t deal with the new acclerating progress of medicine. People are definately willing to be guinea pigs, instead of running to China we need to change the system in the US. If the US is unwilling to change, then scientists should collaborate with Chinese clinics to do the science right.

  • smarsman October 10, 2011 on 11:24 am

    Your article is both biased and inaccurate. Yes, there needs to be a balance, but you have failed to provide a great deal of information that would portray a more honest assessment.

    First of all, you cite a couple of examples of stem cells causing deaths. The first one is about a woman who never got the stem cells. It is like the woman who had a stem cell treatment one day, then fell that night, striking her head and she died from the cerebral hemorrhage. The headlines read “Woman Gets Stem Cell Treatment and DIes.”

    The second example, one where teratomas grew were not from adult stem cells, but from fetal stem cells and one could argue that is the same possibility as with embryonic stem cells. But show me a specific example, out of the literally tens of thousands of injection in the tens of thousands of patients that received treatments, where there were long term serious adverse effects. If you can find them, please compare this to the record of FDA approved drugs like Vioxx. You will find that the Chinese way has actually been safer, much to the chagrine of our researchers, doctors and others who have been putting out inaccurate and biased data.

    The facts are that people are seeing results, both figuratively and literally. I have personally seen children that were unable to respond to light with ONH or SOD that now do respond. I spent an hour with a Romanian man who was flat on his back after an incomplete C4-5 spinal cord injury, where he was only able to rotate his hands. Today if you pull him up, he can sit for 30 minutes, he can lift his hands over his head, he has regained 100% bowel control and bladder control for up to ten minutes and he claims he has complete feeling to his knees and has had sexual relations for the first time in a decade. This all happened after four series of adult stem cell treatments in China, each one consisting of six injections. And what is the response from doctors in the US? “Nerves regenerate themselves and this was probably from that, not the stem cells.” Right, after seven years of no change with intense physical therapy, progressively this
    man’s body started working again commensurately with the stem cell treatments, but they had nothing to do with it?

    This is the mentality of those who wish to find any reason to hold on to their beliefs and their research dollars. Be dismissive. Write stories that while telling technical truths, leave an image that is a lie. And all the other forms of disinformation that are employed by close-minded people continue to happen.

    Is China an ideal place for stem cell treatment? No, but contrary to this article, they do have regulations as do the other countries mentioned, but they also have different ways to go about their testing. But the arrogance of US based doctors, Big Pharma and researchers would have you believe that the FDA process is the only way to go forward and in the meantime, many people remain sick and die as a result.

    If one of my loved ones had one of these horrific conditions, I would certainly be open to stem cell treatment NOW because I have not seen any evidence that is any less safe than what is put on the market here. In fact, from what I can tell, it’s safer.

    • Peter Murray smarsman November 19, 2011 on 7:14 am

      Your testimonies are fascinating. Were these cases documented?