Wednesday, June 3, 2009

So Mad I Could... Twitter?

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?).

To end on a positive note, check out the video of Baby Chewbacca I just posted in my summary of Fletcher's sixth stem cell treatment. Too funny!


Rosetta said...

GRRRRR!!! That makes me mad too! You'd think that the parents would know enough to know that they are NOT embryonic stem cells! That was the major thing we emphasized in all of our interviews, these were ADULT stem cells NOT embryonic stem cells. Was the man from Temple Prockup? The Austin station interviewed him for the story they did on Sierra last Sunday.

Bird said...

Well, as someone who would consider pursuing stem cells let me say that that would frustrate me too, BUT I find that Docs in the US are quick to dismiss anything that parents choose to do on their own.

So excited about the new bambino on the way!!!! I'm going to have to investigate the pump thingy you're talking about.

Anonymous said...

You go out of your way to give CNN and the parents and the doctor the benefit of the doubt. I'm glad that you feel better. Emotion is what it is all about insofar as the news media is concerned. Getting the facts straight? Not. So long as it sells.

Despite inaccuracies, someone who never heard of Beike before now knows about it, and might check it out. Because there are a lot more parents like Bird than people realize.

So I think the story is a wash on effects - positive or negative.

heh - got you to tweet, eh?

Looking forward to reading more about Fletcher and the birth of his sibling.

Brandon said...

whoa i seriously didnt even know that i had a blog lol. but for some reason i was already logged on!! anyways, i hope everything is well with you and adorable Fletcher. im finally back in the states and hating it lol. i really dont like California. i saw the video of Fletcher on top of a few other watchers and everybody couldnt help but love him immediately lol. a lot of the girls think he is the best little guy out there so Fletcher needs to be careful because he is being a player!! lol. but i hope everything is well, hopefully if or when i get some more money, ill go back to China to get some more Stemcells done. talk to you guys later. btw, my E-mail is if you lost it or something.

Tuto Lahrssen said...

Hey Erin! I saw the video, and all I can get from this is that the US is realizing all the revenue lost due to these procedures done in foreign countries. We know this works at some degree, we have seen improvements with our own eyes but perhaps these results are not quntifiable and that is what they are holding onto. I hope there will be some approved treatment in the US because we all know this works and there are people and more importantly, kids out there who deserve a future despite political and economical inclination of others.

AshleyS said...

I, too, get frustrated with the "confusion." People hear "stem cell" and immediately get on the offense or defense, not recognizing there are different ones . . .