#DoItFORCokie

Inspiration + Advocacy by brightthin365

Cokie Roberts American journalist (1943-2019)

Reflections on Cokie Roberts – Open post to American news outlets via Facebook – September 18, 2019

The news that fabled, esteemed journalist Cokie Roberts had died was sad for her many fans from NPR and ABC.  This was a woman known to be kind, tough and fair.  She was extremely well respected professionally and beloved by her family and friends. I always appreciated her honest, clear-eyed, balanced reporting and editorializing.  I yearned for the Cokie take on a situation since it always seemed to be rooted in reality and truth even if I wanted her to take a different angle.

The news of her death due to “complications from breast cancer” hit me doubly hard.  Early stage breast cancer does not kill you but Metastatic Breast Cancer will.  It is hard living with this disease for so many reasons – the never-ending treatments, the side effects, the constant dread of progression and deepening illness, a prognosis of 3-5 years.    But this disease is made harder when so many don’t fully understand it.  Even folks who have been touched by breast cancer are shocked to learn that over 42,000 people in America die each year from MBC and this stat hasn’t changed in DECADES.  People just like Cokie with lots of living and reporting left to do.  People like my friend Hannah who had lots of photographs left to take and love to give.

In the lovely and poignant tribute by Nina Totenberg of NPR, it is learned that Cokie Roberts was first diagnosed with breast cancer in 2002 and that it had come back again 3 years ago.  What hasn’t been widely discussed is that when “breast cancer comes back” it’s Metastatic Breast Cancer, stage 4, and that means the cancer has spread to other parts of the body.  Many people also don’t know that Cokie was part of the 30% of women who do everything their medical teams ask them to do with an early stage breast cancer diagnosis and yet, the cancer still comes back.  When this happens, one is told that there is no cure and that you will be in treatment for the rest of your now shortened life.  You are told that the prognosis varies and is hard to pin down depending on your exact breast cancer type, but in general the average life expectancy is still about 3 years.

Cokie Roberts was able to live 3 years after her diagnosis of MBC and by all accounts lived life fullest right to the end.  She didn’t want the public to know she was sick and she was able to do the work she loved. 

So how does this make me feel?  I totally get when someone wants to keep their medical condition private – it is obviously important to have this protected and honored.  It took me between 6 – 9 months to let everyone in my orbit know of my diagnosis and almost a year to truly go “public” with a wider audience through my fundraising work with The Cancer Couch Foundation and my support work that I now do with SHARE Cancer Support.   I also really understand that the process of telling people of your terminal illness is hard, since for me, it always feels vulnerable and unsettling.  You can never be sure what reaction you’ll get.  Death and incurable illness are tough conversation starters on the best of days.  But when you are one of NPR’s Founding Mothers and a national journalistic legend, I cannot imagine what that kind of disclosure would feel like. 

I can imagine that Cokie Roberts learned about the egregious shortage of research funds dedicated to actually funding a cure for breast cancer, metastatic breast cancer that is.  In fact, less than 7% of the breast cancer research funds raised worldwide are focused on MBC research. That’s an important story to dig into.  Why is this the case when the same large number of people are dying each year every year for decades?  Where does all the money go and why?  So many people are stunned when I tell them this fact.

I also imagine Cokie knew about efforts being made in this current congress with the “H.R. 2178- 116th Congress: Metastatic Breast Cancer Access to Care Act” and its companion bill in the Senate, S. 1374, to simply eliminate the waiting periods for disability insurance benefits and Medicate coverage for individuals with MBC.  So many of my friends with MBC need this benefit now, not in 2 years when the waiting period ends since they may not be alive.  This is simple, no-brainer bi-partisan legislation that should be signed by both parties and this president.  And yet so many in Congress have not signed on. That’s another good story to follow up on. 

And so, Cokie Roberts, has died from Metastatic Breast Cancer and there are really important stories about MBC for NPR and ABC and every other news outlet in America to tell.   We are losing too many great people to this disease.  It is the ultimate bi-partisan issue.  I am calling on journalists and editors mourning the loss of this amazing woman and leader in your field to dig a little further, ask more questions on what is being done (or not being done) for MBC.   Follow up on the story of Metastatic Breast Cancer.  Do it for Cokie.  Do it for all of us.

#doitforCokie

#Cokie

#Cokie_Roberts

@npr

@abc

For those who want to do something in honor of people like Cokie Roberts and the 42,000 other MBC patients who will die this year, here are some great places to start:

  1. Please consider donating to an organization that funds MBC research.  The Cancer Couch Foundation (www.thecancercouch.com) gives 100% of every dollar raised to two MBC research labs at Memorial Sloan Kettering Cancer Center and Dana-Farber Cancer Institute and every dollar is matched 100%.  Other great choices are BCRF Metastatic Research Initiative & Metavivor.
  2. Support efforts like SHARE Cancer Support’s Metastatic Breast Cancer TalkMets Helpline through             https://donatenow.networkforgood.org/sharecancersupport

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