Everything you've always wanted to know about stem cells

Richard and I spoke to our stem cell class at Stanford this past Monday. Each week, Professor Scott asks for student volunteers to make short (10 minute) presentations on any topic pertaining to the subject of stem cells. We spoke about our experience in China, and the response from the class was tremendous - our 20 minute presentation ran over an hour. Afterwards, Professor Scott wrote about it in his blog here.

For those who want to learn more about stem cells and the latest technological advances in this area, there are free podcasts of each week's class on iTunes. Go to iTunes, click on iTunesU, then choose Stanford University, click on "Straight Talk About Stem Cells." If you have trouble accessing iTunes, Professor Scott's book, Stem Cell Now, is a great source in understanding the basics of stem cells. We read this book in the class.

Afterward our representation, many people thanked us, but we really should be thanking them for letting us share our experience and for their insightful, perceptive questions. Some of our classmates work in the medical field while others are teachers, engineers and researchers. Most have a good understanding of stem cells. Here is a sample of some of the Q&As:

Q. Did the Chinese doctors follow up with Richard after he was released from Nanshan Hospital?

A. No. We were given a discharge report with no specific instructions on how or when to follow up. We were, however, told that we could contact the hospital staff should we have any questions or concerns.

It is standard medical protocol in the U.S. for doctors to follow-up on the patient's progress after the patient is discharged from the hospital. This typically involves medical prescriptions, instructions on follow-up care and a check-up appointment with the doctor. So far we have not been contacted by the Nanshan doctors, but we have received a group email from a U.S.-based Beike representative asking Richard about his progress.

Q. How did we hear about stem cell therapy at Nanshan? What studies or reports did we read that convinced us in going to China?

A. We heard about Nanshan from fellow MJDers' experiences. There were no formal medical studies or reports published or provided by Beike about the Nanshan stem cell patients that we were aware of. We researched Beike's website, sent an inquiry to Beike and corresponded with their staff. We accept the fact that we had no guarantee that the treatment was going to work.

I distinctively remember cringing as I listened to my answer to this question. Did we sound desperate and naïve? There is so little that is published about Chinese clinical results that prospective patients mostly rely on anecdotal evidence from stem cell blogs like this one and others at stemcellschina.com. In the package of materials provided by Beike to prospective patients, there was a list of publications by Dr. Yang Bo of Nanshan Hospital, but none of these papers are easily accessible (outside of China). My suspicion is that even if they were available, the text would be in Chinese.

Q. (Directed to Prof. Scott) Were there any representatives from China at the Annual Meeting of the International Society of Stem Cell Research in Cairns, Australia last month?

A. No. The organizers have hoped that by holding the meeting in Australia that it would encourage more participants from Asian countries. Japan was well-represented.

There was some speculation from the class as to why China did not participate. One classmate who is ethnic Chinese suggested the language barrier might be a factor. Perhaps Chinese researchers and doctors are not fluent in English and thus not confident in presenting their work in English. Perhaps, she also hypothesized, their non-attendance can be attributed to the traditional Chinese belief that one should not toot one's horn for fear of being called immodest. I subscribe to the former argument.

I can understand why there is so much skepticism about stem therapy in China. The burden of proof as to whether or not the treatment works has shifted to the patients and not the Chinese doctors or researchers. Patients write about their experience and progress through blogs that are used as anecdotal testimonials. The patients then cite reports of medical visits with doctors in their home countries to further support that there is measurable improvement. In contrast, Chinese doctors seem disinterested in documenting and following up on their patients. This curious lack of interest and initiative on China's part may lead the West to believe that China has something to hide. If the treatment works, then why not show the world solid empirical data instead of relying on soft anecdotal support? Patients can talk themselves blue in the face about how they think the treatment worked for them; unless the Chinese are willing to subject the trials to peer review, however, the treatment will never gain any legitimacy in the West.

Someone in class asked us if we had any regrets about going to China. We told her that we had no regrets whatsoever because we entered into this venture without any expectations of a miracle cure. I still believe that stem cells are the future of medicine. There has been much finger-pointing about how the West is determined to short-change China's efforts. As an ethnic Chinese, I want China to succeed in becoming a premier provider of stem cell therapy. But it is not going to get there without self-advocacy and opening itself to Western scrutiny. There needs to be more effort in the documentation, disclosure and discussion of its clinical experiments. If China wants its accomplishments to be recognized in the West, she must abide by the same protocol and regulations of the Western scientific community, particularly peer review. I can only hope that discussion on blogs like these and in other forums will help facilitate greater cross-cultural understanding and dialogue on stem cell treatments.

Conspiracy Theory

According to an email we received today from a Beike administrator, the WSJ piece on Chinese Stem Cells published yesterday both misquoted and mis-represented the comments made by Ms. Bogert and Ms. Nguyen, the mothers of the boys treated at the Shenzhen Nanshan Hospital.

There is already enough controversy over the ethics of stem cell therapy before calling into question the legitimacy and effectiveness of the institutions offering such treatments. Most people acknowledge that such treatments exist in bona fide hospitals administered by credentialed physicians. However, the jury is still out on the effectiveness of stem cell-based therapies and the possible complications. Patients, their family members, doctors and other experts are interviewed for their perspective and knowledge of the issue. This is where the trouble begins.

Ms. Nguyen and Ms. Bogert are not the first people who complained about their words being taken out of context to apparently support a reporter's biased conclusion. Dr. Susan Perlman of UCLA faced a similar situation when she was interviewed and quoted in a Business Week article in February 2007. I do not know Ms. Nguyen and Ms. Bogert personally, but I have no doubt that they are honest people and loving parents. Dr. Perlman is Richard's doctor, I trust her implicitly. As far as I am concerned, none of these three women would lie about their views being misrepresented.

I don't know why journalists would deliberately violate their integrity in order to conform to a popular or more socially acceptable point of view. Just look at the majority of articles we've linked on our blog - the consensus is by far more pessimistic than not. Is it a case of schadenfreude in suggesting that the Chinese are failing, thus justifying the collective foot-dragging of the Western world in developing stem cell treatments or even researching the therapeutic possibilities? In the meantime, this type of negative press further polarizes the proponents and opponents of stem cell treatment. Current press coverage leads the proponents to believe that any progress will always be sabotaged by the opponents.

I am not one to subscribe to conspiracy theories nor am I willing to be mired in the emotional Strum und Draug that clouds this issue. We went to Shenzhen with the understanding that there was no promise or guarantee that the treatment would be effective. We went anyway because if we didn't try, we'll never find out. Has the treatment worked? Only time will tell. Even if it wasn't effective for Richard does not mean that it wouldn't help others. In the end it is up to each of us to decide what is right regardless of what others tell you or what you've read.

Article in today's Wall Street Journal

Just a quick post --- there's an interesting article in today's Wall Street Journal about Chinese Stem Cell Therapy. More specifically, it features the Shenzhen Nanshan Hospital, Beike and ex-Nanshan patients.

Unfortunately, the WSJ is one of those publications that requires a paid subscription in order to peruse its content. I cannot therefore post a direct link to the article. Nevertheless, for those who subscribe to the Journal either electronically and/or in paper format, the title to the article is "Seeking Hope in Chinese Stem Cells" and it is written by Nicholas Zamiska. It appears in Section B page 1.

What makes the story even more poignant is the fact the patients featured are children from California. Richard worked for 20 years in Cupertino where the Nguyen family hails from.

Second Month Progress Report

Haven't posted for a while. We've been back for over two months now. There's not much change, for better or worse. Aside for the sprained ankle, we've noticed that Richard has a few minor setbacks in choking, manual dexterity and energy level. Perhaps Richard will ask his doctor to increase the dosage of Prozac to control the choking. The power web OT finger exerciser is on order and will be arriving soon. In terms of energy, Richard is resuming his Creatine powder drinks that he had let lapsed after we came back from China.

On a positive note, Richard is doing better at our weekly Pilates class. He's not huffing and puffing. Also his walks on the treadmill are steadier, faster and longer. He continues to go to the Y and uses his recumbent bike to maintain strength in his limbs. Lately, he's taken to wearing an eye patch over one eye while riding in the car to lessen his double vision. I can't help but laugh every time I glance at my rear view mirror and see this pirate in my car.

It is hard to keep up with the daily exercise regimen at home. I think that's why staying at Nanshan produced better results. At the hospital, Richard is removed from the conveniences and luxuries of home so that his main focus is his daily PT and OT. Once back home, there are the cable TV, the internet, books, magazines and newspapers, not to mention a soft, comfortable easy chair to tempt him into taking it easy.

Our friend and fellow Nanshan Ataxian, Nick, recently sent us an interesting link about a man who gave a presentation at this year's NAF (National Ataxia Foundation) conference about his unique system of training someone with Ataxia to walk unassisted:

http://www.walkingwithataxia.com/

Richard is in the process of checking it out. It would be great if it works. Thanks, Nick!

There are two annual events that we plan on attending. They are:

ACARM (All California Ataxia Research Meeting) held at Irvine, CA on October 14, 2007

http://home.comcast.net/~fernandesml/ACARM6.pdf

and the NAF Annual Membership Meeting held at Las Vegas, NV on March 28 - 30, 2008

http://www.ataxia.org/pdf/2008AMMDestinationInformation.pdf

Our stem cell class at Stanford starts next Monday. I have yet to do the first assignment which is to read the first chapter of the lecturer's, Christopher Thomas Scott, book. Richard and I are looking forward to learning more about the subject. It is a good thing that there's so much progress made and yet for the afflicted, it doesn't seem to happen fast enough.

Exercise Redux and other ramblings

Here is a quick update as to the goings on ....

the ankle has been steadily improving. I'd say that it is about 95% of where it was.

we now have a treadmill at home so that instead of pacing up and down the hall, I can exercise while being in one place.

after a recent physical examination, my GP also added his support for future prospects for stem cell treatment.


I realize how much bio-technology has advanced over the years.. I am reminded of an incident several years ago where I had to attend a remedial traffic school session. It was held at a local middle school's science classroom on the weekend (~ 8th grade). During one class break, I pondered at some of the posters on the bulletin board. The subject of the poster: DNA.

I attended college in the late '70s (not majoring in any biotechnology related discipline) and had attended the 8th grade in the early '70s. Suffice it to say that DNA was never even mentioned in the textbooks and was the subject of cutting edge research. I only have to imagine where topics such as RNAi, stem cells, nuclear transfer, blastocyst, etc. were mentioned in closed laboratory offices and technical conferences.

Potpourri

Richard's ankle is finally healing and he's easing himself back into his exercise routine. His Pilates session last Thursday produced profuse sweating and an alarmingly pale face that I have not seen since his first stem cell injection more than two months ago. It is sobering to realize how quickly the body atrophies. On a more positive note, Richard has found that he no longer has to use to the bathroom at night since returning from China.

One of the many symptoms of MJD is frequent nocturnal urination. A few days before we were scheduled to leave Nanshan, Richard woke up in the morning and realized that he slept through the night without having to use the bathroom. He was cautiously optimistic at first, fearing that it was a fluke. For the past month, unless he drinks copious amounts of coffee after dinner, he seldom finds himself waking in the middle of the night to visit the bathroom.

We finally bought a treadmill which will be delivered and installed tomorrow. Together with the recumbent bicycle and hand weights, Richard will have a fairly complete set up for his PT. I've located an online vendor that sells parallel bars and OT supplies. Those will be next. Richard's manual dexterity has started to worsen a bit so I need to get him to do the OT exercises.

We will be attending a seminar given by the Stanford Institute for Stem Cell Biology and Regenerative Medicine on "Harnessing the Power of Stem Cells" tomorrow evening. The keynote speaker is Dr. Irving L. Weissman, the director of the Institute and co-founder of biotech company, StemCells, Inc. There will be two other lectures that evening on "Embryonic Stem Cells" and "The role of stem cell treatment in the repair of the brain and its functions".

Furthermore, thanks to our friend, Cathy, who pointed out the course to us, we've enrolled in the course "Straight Talk about Stems Cells" at the Stanford Continuing Studies Program. Here's a link to the course description:

https://continuingstudies.stanford.edu/course/BIO53.asp

Our objective is to keep abreast of the latest development in stem cell treatment in the United States in the hopes that it will be available in the U.S. in the very near future.

Speaking of stem cell treatments, our friend Fabio emailed us two interesting links recently. Fabio's mother, Nadja, has ALS and was treated at Nanshan the same time we were there. The following links are of facilities offering stem cell treatments in Cologne, Germany and the Ukraine respectively:

http://xcell-center.propreventa.net/index.php?id=|&L=1

http://www.emcell.com/

Breakpoint

I was first introduced to the book "Breakpoint" by Richard A. Clarke while resting in my Nanshan Hospital room after a lumbar punch. It was an audio book that I downloaded from Apple's iTunes. It touches on so many of the issues pertaining to my recent trip to China and my own experiences at home:

• stem cell therapy
• China's emergence as a world power
• the World Wide Web
  
• Cambridge, Massachusetts
  
• two of its major universities,
  
• the Charles Hotel in Cambridge

• the Googleplex in Mountain View, CA
  
• bionic parents and techno-children (see link below)
  

http://www.salon.com/mwt/feature/2007/05/09/everything_conceivable/?source=newsletter

Now for my 2 cents.... what are the ethics concerning stem cell therapy? Should it be restricted to correcting nature's defects and/or injury or could it be used to enhance our lives? How will stem cell therapy affect the natural evolution process? Is there a gray area?

Is stem cell therapy just for the wealthy? How else does the cost and knowledge come?
Here is my opinion regarding the first question.

• What are the ethics for stem cell therapy?
  

• To the extent that we understand what is "wrong", correcting the disease or injury is reasonable. For example, restoring a person's health after paralysis due to spinal cord injury seems reasonable. I would include correcting for a known defect. This doesn't deal with the matter of testing for potential "defects" which is a volatile question in and by itself.
  
• Enhancing the genetic makeup without a known "deficiency" seems wrong. As depicted in the book, designer babies where one buys features like shopping for a car caters to the wealthy.
• Is there a gray area? Taking advantage of an opportunity to apply the latest and greatest technology falls in this category. To imagine what I'm referring to, think of The Six Million Dollar Man . Also, NBC's Fall 2007 TV lineup includes the Bionic Woman.
  

Take a look at the book or listen to the audio version. I highly recommend it.

• Is stem cell therapy just for the wealthy?
  
• How else does the cost come down and the experience come about? There seem to be very few organizations willing to foot the bill. Even the "wealthy", as individuals, cannot sustain such an effort on a broad front. The primary thrust needs to come from the support of governments which are among the few institutions large enough to support such an effort.
  

A note on my progress. After returning from LA, I re-sprained my left ankle, The good news is that it isn't broken or fractured. The bad news is that I restarted the healing time after two and a half weeks and the ankle is still a little swollen.