Stem cell tourism

While stem cell research funding remains bogged down and encumbered in the United States, other countries, most notably China, have forged ahead. Patients are travelling to foreign stem cell clinics, to try treatments not available in this country, whether they follow standard testing and clinical protocols or not.

Lab research with stem cells has been extremely exciting and suggestive of great potential, but the current artificially embargoed situation in the US and several other countries provides ground for less than scrupulous treatment centers.

Beike Biotech, in Shenzen and other cities in China, is one bio-technology company which offers stem cell treatments for diseases that are usually considered untreatable. Their site offers many testimonials from people who have been treated for conditions like Spinal Cord Injury, Autism, ALS, and brain injury, but little in the way of systematic followups. Reading their patient blogs, although very interesting, it is difficult to tell for any given patient exactly what was done beyond “injections of stem cells” and exactly what their outcome was after they left the clinic. Most of the blogs end one or two entries after leaving. Beike’s treatment philosophy is summed up in this paragraph from their website:

“Beike’s greatest strength and what differentiates it from other research initiatives is that Beike specializes in clinical applications. There are a lot of patients in countries around the world who could have a better quality of life and even extend their lives with the technology available but don’t have the chance because of politics, religion and bureaucracy. Beike’s goal is to help those people. Beike takes the most advanced biotechnological research in the world, specifically stem cell therapy, and applies it clinically at a rapid pace.”

A note on the CareCure forums by Jon Hakim who runs the stemcellchina.com website (devoted mainly to Beike, but also other researchers and clinics in China) attempts to address the lack of information:

“The goal for the web site and my work (which is starting out as a hobby to this point but I am hoping will lead to something more – maybe some years later, setting up a hospital?) is to make the information that the Chinese doctors and researchers involved have palatable for foreign consumption. It is not an easy task and I am just starting. I hope to give the industry in Chinese some legitimacy – over time – in the eyes of the foreign community. If I do my best to get as much information and documentation out there with detailed patient cases, interviews, etc. and to help the hospitals, researchers etc. to get the information that the west needs, that should lend some credibility to what’s going on over here and should help to speed up the delivery of more effective treatments.

For example, Dr. Yang out of Shengyang hospital has done a clinical trial on 56 patients and has treatment more patients than anyone in the world for diabetic foot using adult stem cells (180+). However, Dr. Yang does not speak English and she has given me her paper that she would like to get published in foreign journals. It is not anywhere close to what is necessary to get published in a foreign journal, so I have put her in touch with diabetes professionals in Ireland who are helping the with the paper. ” Full text here…

Another doctor who gained some notoriety is Huang Hongyun, a Chinese neurologist working at Chaoyang Hospital, who does not use stemcells but embryonic olfactory ensheathing cells (additional articles here and here)to treat Spinal Cord Injury and ALS (Lou Gherig’s Disease). Although the jury is still out on the efficacy and safety of his OEC transplants, it may be impossible to make a determination for for quite a while since accurate data are nearly impossible to come by, according to this very detailed 2005 article in Technology Review.

Although Huang was somewhat favorably mentioned in a 2003 article in the New Yorker detailing Christopher Reeve’s advocacy of cutting-edge research into treatments for spinal chord injury, an April 2006 (fee required) article in Nature, describes how three spinal-cord experts have published a critique (B. H. Dobkin, A. Curt and J. Guest Neurorehabil. Neural Repair 20, 5-13; 2006) of his methods after examining seven of Huang’s patients before and after treatment, reviewing his publications and visiting his lab. They say that although his surgical technique is good, five of the seven patients experienced side effects including meningitis, and none of the patients showed any improvement after treatment. The journal Nature contacted several of the patients, and they claim to have experienced benefits, such as reduced sweating, muscle spasm and pain, and better sense of balance. However with no blind assessment or long-term observation, it is impossible to sort out cause and effect and wishful thinking.

In general it seems that although there is much good research being done in China and other "stem-cell tourism" countries, the imbalance in availability of clinical trials in the developed world and the not-terribly-legitimate clinical trials in these countries creates an irresistible draw for desperate patients with no options in their country of origin.

Hopefully this will change over time, and as policies change and research cultures change. The Shanghai International Symposium on Stem Cell Research in 2007 drew researchers from all over the world, and besides papers on potential avenues for treating retinal disease, diabetes, nerve disorders and more, featured sessions on "Publishing in high-profile journals", "Ethical issues in stem cell research and treatment", and "Cultivating a global outlook and interactions in stem cell research."