I made my first tweet, and it was in anger. Well, not anger as much as frustration, really.
Trevor recorded a "Special Investigation" segment on CNN about stem cells. Central to the segment was a family with a terminally ill daughter who will be treated in August at the same facility at which Fletcher received treatment. Well, as usual, the story focused on these desperate parents throwing all logic out the window by traveling to another country for medical treatment (gasp!). That is not the part that frustrated me. All stories about stem cells have this dramatic bent and I have gotten used to it.
The thing that got to me was that the anchor said that the family told her they will be using EMBRYONIC stem cells in China and then the piece goes on to interview a stem cell researcher in Temple, Texas (I think he was affiliated with Texas A&M) who made a big deal about using embryonic stem cells and how that is bad and how treatment with adult cells is yielding good results and is available in the US. And that going to other countries (while he admits he doesn't know squat about the programs in such countries) is a categorically BAD idea.
Those following this blog carefully already know why I am frustrated: Beike uses ADULT stem cells NOT embryonic. So while the piece made it look like pursuing the very program we pursued was a bad idea, if you really know the facts, the on-air expert was in a sense advocating for the program (although unknowingly, which is another aspect to my frustration, the fact that no doctors in the US even bother to really investigate these foreign programs they bash).
Then the piece goes on to interview some random (and, according to the vibe given off by the piece, bogus) doctor that has a stem cell practice in Peru, further damaging the credibility of Beike.
In the CNN anchor's defense, I suppose she just took the parents word at face value and they were the ones confusing embryonic and adult stem cells (which can be a confusing concept) but this was an investigative piece, so don't you think she could have done some actual, ahem, investigating? Also, they said they contacted Beike and had not gotten a response, so I suppose some of the fault lays on them as well. Beike doesn't seem to have a polished media liaison at the ready, which I think is actually doing them a disservice, but also points to the fact that they are a medical lab, not snake oil salesmen, and are more interested in the science.
So, when the CNN anchor solicited comments via twitter, I thought it was time to tweet. I have an account that I opened to follow a couple of fellow bloggers, but had never even checked it. I went to the help section and found out about "reply" tweets and I was set. I resisted the urge to be confrontational and tell her to stop sensationalizing everything and get her facts straight and instead just told her that she should be advised that Beike in fact uses adult and not embryonic stem cells. I feel better now, even though there is a good chance she won't even see the message since I'm not sure I got her twitter address correct (does capitalization matter?).
This is a blog about my son, Fletcher, who was born 15 weeks too soon weighing 1 pound 9 ounces. After three months in the NICU, Fletcher made it home and is a vibrant, happy boy, but will never completely outgrow the marks of his extreme prematurity.
Fletcher has been diagnosed with spastic quadriplegic cerebral palsy (mixed tone) and has significantly delayed motor skills. This blog not only serves as a journal of Fletcher's remarkable life, but hopefully will also be helpful in some small way for other families in similar situations.