Voice of dissent

It has been a while since our last post. Life has lapsed into a lulling routine of Pilates classes, PT sessions and work-outs at the Y. Richard continues to make progress in his PT sessions and his stamina remains good. He has taken up Sudoku puzzles to keep his mind sharp. At the rate he's going, I won't be surprised if he achieves "grand master" standing soon!

On a different note, this past April I received an email from Fabio, the son of Nadia, a fellow Nanshan patient who passed away in June 2008 from ALS. In his email to us, Fabio asked us to read his post dated April 22, 2009 which contained an RAI (Italian TV) program that had subsequently been posted in five installments on youtube for public viewing.

It is my understanding that Fabio and Nadia worked with Beike Europe, the European branch of Beike Biotechnology in China, for their trip to China for stem cell therapy in March 2007. Fabio is among the many Italians who were dissatisfied with the lack of results and response from Beike after their trip to China. Their frustration culminated in a confrontation with a Beike Europe official on the TV program.

Since I neither speak nor read Italian, I had to get my friend, Arianna, who is Italian, to translate the program for me. Here's her synopsis:

The head of Beike Europe (who does not have a science background, he has a marketing background) is trying to defend himself from angry customers that did not obtain a result. There is a scientist who says that the problem with Beike is that it has not one clinical study published on the treatments, pre- and post comparisons, there is no data on effectiveness nor on follow-up. Another doctor (the elderly looking one) puts Beike to shame by saying that it is unethical to promise such benefits when there is no data to support it.

In her article in Macleans.ca, "To China with a cure", Alexandra Shimo wrote:

Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.

I think Ms. Shimo can rest easy knowing that there are those few who will not rest until they find the truth. However, the price of being a truth seeker is a terrible one. Fabio appeared on the RAI program with his sister. He is the earnest young man in a dark suit and red tie. One does not have to understand Italian to be touched by the pain on his face when he was reminiscing about his mother and her illness. It is an image that will haunt me for a long time.