advocate vs. squeaky wheel?

You never know who's lurking.

I stumbled onto this post last night.

My response fluctuated between flattered & irked.

Flattered that the author feels I've done a good job using the tools available to a mommy in this Questcor issue.

Irked to be labeled...

"They could have shown kindness - if not to the community, than at least
greased this squeaky wheel."

Seriously? Squeaky wheel? I like to imagine I'm more of a raging mother bear....or a roaring lion-ess...a Sarah Palin...

Or...perhaps not as sexy...but what about the thought of a mother holding a sick baby...demanding the only humane answer - immediate (not delayed until insurance approval) affordable (not to be mistaken as free) access to the medication that could provide her baby a miracle. But alas in the eyes of profiteers I'm more squeaky wheel...not so much the sexy. More a pest...not so much a parent with a point. More a PR mistake...less a heart-prick that something about this is just not right.

But maybe I'm just extra senstive today?

At the end of the day I can appreciate that Ms. White enjoys the same freedom of speech I do.

And you know...I almost think she agrees with me?


~Mama Skates~ said...

i didn't know how to perceive that at first either - but i think that her summary explains:
"Wendy White is President of Siren Interactive, an eMarketing agency that focuses on helping niche pharmaceutical brand marketers use the power of the web to manage their online presence and establish relationships with patient and professional audiences."
she's working to help the pharm companies - not mothers like us....so it's flattery in that u r a real threat to their business - if enough advocating mothers speak up & draw attention to the blatant robbery that the pharm companies are doing to parents, then it's going to hurt their business....she's warning them about mother's like you....good - beware! pharm companies - stop trying to pull the wool over our eyes & do the right thing! do what needs to b done to ensure that sick kids get the meds they NEED - WHEN THEY NEED THEM!!! then there won't be any negative posts out there for u to worry about!

~Mama Skates~ said...

squeak on danielle - for trevy & all the other kids out there that need "squeaky" moms like u!



Yeah, I saw that same post by noticing a couple of visitors from her site. I tried leaving some comments, but apparently she moderates and didn't approve them.

Did you notice that the posts she chose to highlight within - "She blasted Questcor time and time and time again. Her posts raised the ire of friends and family. She got support (and I suspect links) from mothers like Jen and Lisa. Finally, she gets a call from a Senator’s aide. They had found her blog and she ended up testifying on Capitol Hill." - do not support her timeline?

In her hurry or careless rush, she completely missed the depth of research and reports I had begun posting since one year ago:

Sept 2007 - Questcor Uses Orphan Drug Act as a Strategy Tool; Oct 2007 - What Questcor Didn’t Tell You about Their Income Losses; Nov 2007 - Questcor Announces Q3 Earnings; Nov 2007 - Questcor’s Real Strategy Creates Huge Opportunities for Profit!; Dec 2007 - Questcor’s Senior VP and CFO, George Stuart, becomes the 1st Inside to Cash some Profit

Just as she assumed we knew each other previously, she also assumed I was another mommy. Gotta watch out for those 'mommy bloggers' ya know.

Wendy may have read this post which followed the JEC Senate hearing: July 2008- Price Gouging in Extremely Vulnerable and Captive Market

But she completely missed these: July 2008 - Small Patient Population - Big Drug Prices; and August 2008 - Questcor’s CFO is Resigning

If Questcor had been paying attention and was concerned that their reputation might be tarnished by their actions, then they certainly missed plenty of opportunities to address what was being said long ago.

Just my opinion

Monica, James, Connor McGuire said...

I say....KEEP ON SQUEAKING!!!! Who cares what a nitwit that is trying to help big pharm rob helpless families has to say. She obviously doesn't have a child with any kind of special needs or she would realize the lengths that we mothers will go to and not pass judgment. I applaud you you on all of the advocacy you provide for the IS Community. So everybody join me in saying..."squeak, squeak, squeak". Maybe I'll get you a personalized notepad for Christmas that says: "from the desk of the squeaky wheel" ha ha. I would personally take it as an honor that she showed that you are not a mother to mess with! That and the fact that once again Questcor is just a big bunch of screw-ups.

Shanna Grimes said...

Ok, I'm fired up again. Squeak on! Ok, better get busy on that site. I've had a week long laptop break in the evenings with the kidney thing, but I'm back on point. This just gives me more fuel.

Shanna Grimes said...

They may be able to contain some of the internet fall out, but with everyone having a similar experience, with obtaining these drugs wouldn't it be easier for Questcor to just change their evil corporate ways? It seems as though Ms. White is just wanting to sweep us under the rug.

~Mama Skates~ said...

sorry for a 3rd comment - but i forgot to tell u...

u're WAY sexier than Palin!!! ;0)

Wendy said...

Dear Lisa,

Thanks so much for clarifying my post. I've posted all your comments on my blog -- sorry it took me a few days.

What you did and are doing is very important work. I am truly sorry for the unfortunate metaphor (the “squeaky wheel” bit). I live in a town jokingly referred to as “The peoples republic of Oak Park” and many of the best advocates I know are squeaky wheels (and proud of it).

I was looking at this post as one of a parent with a point AND a big PR mistake (or series of missed opportunities as was so rightly pointed out).

I'm a parent of a special needs child (nail patella syndrome) as well as head of a marketing firm. My clients ARE pharma companies and if you read some of my back posts you can see that I firmly believe that the best marketing for them is really paying attention to patients and caregivers in every way as well as the importance of transparent communication in an internet world.