Anchored Activism

Issues affecting women with cancer

Wednesday, August 3, 2011

The Right Information, at the Right Moment

A few years ago ophthalmologists noticed that patients treated with Lumigan, a glaucoma medication, started sprouting the kind of long, fluttery eyelashes popular in Harlequin romance novels.  By late 2008 Allergan, the creator of Botox and the immovable-forehead look for middle-aged women, reformulated the prescription, obtained FDA approval, rebranded the product, and introduced Latisse, for the treatment of ‘inadequate’ eyelashes.  


With the able assistance of actresses Brooke Shields and Claire Danes as “spokespeople,” Latisse went on to generate sales of $73.3 million in 2009 alone, possibly more than its predecessor.


If I were strictly an advocate for women’s issues, I’d write about Latisse in between observations by Barbara Ehrenreich (millions of dollars for longer eyelashes? in this economy?) with cartoons from

Liza Donnelly, whose work is frequently in The New Yorker.  Writing as an activist, on the other hand, the goal would be for you to take action by the time you finished reading this, lest I come knocking at your door. Interested in outreach?  We would pass out Latisse samples to every female cancer survivor at walks and runs across the country, shoot a video of the before and after lashes, and upload and distribute on Facebook, Twitter, and Google+. 


Even if overly simplified, this illustrates the multiple directions one SMALL bit of medical information can take.  When this happens with information about cancer -- information that people need to make informed and essential medical decisions -- the hackles on my neck go straight up.  I see this happen daily – in news articles, from television news,  TV “Docs,” to thinly disguised sales people with medical degrees.  Some of it isn’t pretty.


Medical professionals need to understand that a person’s general knowledge about cancer and being diagnosed with cancer are entirely different experiences.  Almost to an individual the reaction to a cancer diagnosis is one of shock, dismay, and fear.  From that moment on the survivor must determine the best possible path through complicated information, competing hospitals, through new medical terms (not to mention spelling them) -- and during a time when the stress of a significant life disruption is at an all-time high. 


It’s not as if the survivor can’t find information.  The challenge is to find the right information, at the right time at the right moment. 


What many survivors may not even realize is that local hospital website will include every detail about its services, but certainly not about the availability of X & Y therapy down the street, unless he or she asks. The problem is that survivors can’t ask about something they know nothing about. 


Social media, with its immediacy and interactive abilities, offers one avenue through the process, but I think it’s probably more helpful for support AFTER treatment decisions have been made.


People are racing to build apps for patient navigation, but from what data?  What model?  If you even pop the phrase “patient navigation” into a conversation you might surprised by the variety of responses.  


In the interim the oncologist’s time grows more harried.  Nurses are rushed, and essential discussions about treatment are scaled into forms that transform nuance into data.


Watching all these trends, listening to all the arguments, the advocates, and occasionally the clamor, brought me to what I term ‘anchored activism’ for people with cancer.  The need increases by the day. Our population is not growing any healthier and educational levels are declining, especially where I live in Texas. 


Please stay tuned, because this discussion is just beginning.