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