Reading the blog postings of patients who have undergone experimental stem cell therapy in China, I found myself recalling the "black clinics" of Chiba city dreamed up by William Gibson in his breakthrough novel "Neuromancer."
In Japan, he'd known with a clenched and absolute certainty, he'd find his cure. In Chiba. Either in a registered clinic or in the shadowland of black medicine. Synonymous with implants, nerve-splicing, and microbionics, Chiba was a magnet for the Sprawl's techno-criminal subcultures.
It's not that there is anything new about the sight of Americans, suffering from medical conditions that U.S. doctors can't cure, seeking an alternative elsewhere. That's normal, completely understandable behavior. Reading the accounts of men and women suffering from debilitating illnesses like ataxia or Lou Gehrig's disease, one cannot but sympathize with their hopes that Chinese medicine can offer some solace.
It is the details that confound. The idea of injecting 10 million stem cells taken from umbilical cords into one's spinal cord. The notion that this state-of-the-art biotechnological treatment can be obtained in a country in which hundreds of millions of people are desperately poor and have access to almost no healthcare whatsoever. I traveled in China in 1985, shortly after the publication of "Neuromancer." I would have dismissed the possibility that 20 years later my compatriots would be flocking to cities like Shenzhen (which hardly existed in 1985) for advanced medical treatments unavailable in the United States as sheer science fiction.
Yet here we are. And in "cyberspace," that word coined by Gibson, they can't stop talking about it.
Lyn Jeffery at Virtual China first alerted me to a post by Shenzhen resident Maryann O'Donnell describing the Chinese stem cell blogosphere. I found it strange and discomforting to spend several hours today flitting through scores of blogs authored by patients or their loved ones, describing their plans to go to China, their experiences in China, and the aftermath. Can one invade the privacy of someone who posts their most intimate details for all the world to see? How does one react when the most recent post in a given blog, in which some hopeful new sign is described, is dated six months or a year ago and followed by nothing but ominous silence? How can one not be moved by such posts as the following:
Anyway, Rachael was a totally normal 4 year old girl doing all the things that a 4 year old would be doing. On October 13, 2002 she seemed a little off, being a mom you can relate. She seemed to be off balance and I called the on-call doctor and he told me to go to the Childrens Urgent Care in Brookfield, which we did. No fever, no ear infection which my kids were very prone to but she had a inverted ear drum. Ok, give her advil and she will be ok. That night she woke up because she wet the bed, which is not common for her, I picked her up off the bed and told her to go into the bathroom and she fell over. That is when it began. I immediately took her to Childrens (3:30 am) and from there it was down hill.
They determined that she got a "unknown" virus that made her body literally attack itself. She was fighting the virus and her body went into overdrive and started attacking her brain. To make a long story short, after 11 days we brought home a child in a wheelchair, couldn't see, in diapers and all around just laid there and we were happy if she would move a finger during the day. This is hard for me to write too. Four years later and lots of doctors appointment and lots of therapy we still have a wheelchair, she has CVI which is a vision problem, we know she can see but we don't know what the brain is telling her. She talks about 200 words, cannot eat, get dressed, or bathe herself. Still very involved.
After all the heartbreaks, me ruining my back and ending up in the hospital, all the medical expenses that are not covered by insurance, we decided to take matters into our hands. I did alot of research on stem cells, we have been thinking about this for almost 2 years and now I guess is the time. We are going to China for umbilical cord stem cells, that are donated from healthy newborns and they are tested about 3 times for diseases and such. They put the stem cells directly into the spinal ccolumnvia IV.
We are not expecting a 100 percent cure, just 10-15%. This country is much more advanced then the US in this area. They don't have as many restrictions that we do, but when you are desparate for a cure you will try anything. I do know quite a few people that have done this from all over the world and I haven't heard of anyone not showing any improvements. So the tickets are bought, the apartment is rented there, and the hospital knows we are coming, the passports and visas are pretty much set and we will be on our way.
Is China really more advanced than the U.S.? Or is it just willing to play more fast and loose with unproven medical technologies? Certainly, many Western doctors think the latter is the case, and clinical evidence of beneficial results is scant. But for every U.S. doctor shaking his or her head in dismay I can show you a blog post by a patient who has undergone stem cell therapy at Nanshan Hospital in Shenzhen and who will testify that he feels better.
So far, China hasn't actually invested that much money in stem cell research, although plans are said to be under way for a significant expansion. China's advantage over the West lies in its relative absence of bureaucratic hoops to jump through, and, possibly, though this is disputed, a vastly different cultural conception of abortion and the meaning of an embryo. It's not inconceivable that the combination of these two factors could, in the future, result in China becoming a world leader in stem cell therapies that have been proven effective.
In the meantime, the bloggers will share their stories and encourage each other on. It is impossible not to root for them. Even now, a Silicon Valley resident named Richard, who suffers from ataxia, is on his way to Shenzhen, hopeful that Nanshan's stem cell treatments will result in some minor improvements in his ability to walk and maintain balance. On March 15, he blogged about his farewell dinner.
Lily is reminded of the tale of a songbird that came down with a sore throat one day. His concerned friends dropped by the bird's nest all throughout the day, offering their sympathy and homemade remedies. That night, the bird took every pill, drank every tonic, applied every ointment and wore every talisman given to him by his friends and the next morning, he was well again. Was it all the firepower of the medications that cured the bird? We'd like to think that the healing magic came instead from all the love that was imbued in the medicines. Thank you everyone, we couldn't have done it without you!