Speak Up!

It’s an ironic title for my first blog post in over a month, I know. But its been a truly insane summer, and sadly there hasn’t been time to blog. I’m optimistic that today’s post will turn things around, so keep your fingers crossed for me!


So, here’s what prompted today’s thoughts: I had a follow-up doctor’s visit this morning. When we entered the exam room John pointed out a posted announcement of an upcoming program under the heading: Patients Invited. The event is an upcoming lecture about BRCA in this it’s 20th anniversary year. The slate of speakers was impressive, but it was clear something was missing. There wasn’t a patient/advocate in the bunch.

Interesting, huh? After all the progress we have made, when clinicians come together to discuss a topic that is, from the patient perspective, so deeply wrapped up in emotions, their voices don’t even make the agenda.

It was only a few minutes before the doctor came in, and the three of us got to talking. It started about the state of medical school training, and lead us somewhere (my mind is a sieve) that prompted me to point out the offending absence of patients. He agreed, mentioned that especially if patients are invited, they should be represented on the panel. I, however, felt even more strongly that is was the clinicians that needed to hear from patients. They need to know about the angst of living with the anxiety and fear that BRAC+ patients often experience. They need to hear about the heart-wrenching decisions “previvors” confront, especially young patients who are forced to make decisions about their bodies and future fertility at far too young an age. John also made an excellent point about hearing from patients who have been living with their decisions these past 20 years, and what they think today about their choices.

The doctor continued to agree. The more we talked, the more glaring an omission this was. “You’re absolutely right,” he said. “I’m going to say something. In fact, I’m going to send an email as soon as we are done here.”

Score one for the team!

Here’s the thing. As an advocate, so much of what we do has broader impact and longer time frames that we can sometimes see. The Myriad lawsuit itself took years of sustained passion and dedication by so many before our victory over gene patenting was achieved. But today it took all of five minutes. I am not sure what will come of it, but today someone who has influence heard us and looked through our lens, if even on this subject alone. This doctor is one of the good guys – he “gets it” and I imagine he’ll see things more readily the next time. And with luck he’ll bring the organizers on board, too.

So, SPEAK UP! Our voices are critical, and we are increasingly being heard. When things seem amiss, we need to keep saying so; we need to seek those who are willing to partner with us and allow our advocacy to continue to snowball.

3 Comments (+add yours?)

  1. helensamia
    Aug 15, 2014 @ 00:18:51

    Well said … And so important… A patients perspective is totally different to the clinicians veiws… It is a far more personal veiw..


  2. Michele Martineau
    Aug 15, 2014 @ 15:25:16

    I love this post! Can I share it on my Courage blog? I always say “Never give up”, but sometimes its less of giving up and more of the loss of passion. I think an advocate needs to be on every panel! Even though so many involved in every facet of these events have undoubtedly been touched by BC in some way, there is a very important voice that gets lost. AND I am on a huge driver personally to get the ear of more clinicians. So much happens inside us after surgery, there is a huge lack in after care. Thank you for sharing!! Go get em!


    • Lori
      Aug 15, 2014 @ 15:30:26

      Thank you so much! Sometimes it is looking for the small windows of opportunity! Please feel free to share – I’m flattered!


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