Part Two: Advocacy and the Bigger Picture

Posted by Joanne Milo on Fri, 10/14/2016 - 18:51 in

ADVOCATE:  n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.

Advocacy is the big buzzword in the medical world today.  You might be urged to advocate with Congress about insurance coverage, diabetes research funding and workplace issues.  You are told to advocate for yourself with your doctors, your diabetes educator and your teachers and coworkers.

It can all seem a bit overwhelming.  Where do you start?  What’s most important to you?

I got my first taste of advocacy in the 1970’s when, as a teenager, I went to lobby on Capitol Hill with JDF (before it was renamed JDRF).  We visited congressmen to ask for funding for diabetes research and tell our stories.  I also “published” the JDF Nassau/Suffolk county newsletter (this is WAY before personal computers and publishing software – the old fashioned way of typing an article on a typewriter and then cutting and pasting it onto pages!) … just to spread the word about events and news in the diabetes world.

So where do you start?

Nowadays, I’ve gotten involved with the diabetes online community (DOC), which is a very vocal group of T1D’s who write, blog, podcast, write letters and lobby in and for the diabetes community.  Some of the more active and effective sites include:

  • DPAC: (diabetespac.org) – The Diabetes Patient Advocacy Coalition, co-founded and run by Bennet Dunlap and T1D Christel Marchand Aprigliano, as an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes.  DPAC “seeks to ensure the safety and quality of medications, devices, and services; and access to care for all Americans with diabetes.”  It’s a powerful group and certainly worth a poke around their website.
  • diaTribe: (http://diatribe.org/) – a patient-focused online publication, part of The  diaTribe Foundations, whose mission is to improve the lives of people with diabetes.  “diaTribe seeks to empower our readers with useful, actionable information that gives them hope for a better future, and helps them live happier and healthier lives. Our tag line is ‘Making Sense of Diabetes (http://diatribe.org/about-diatribe).’” Regarding advocacy, they offer a column called “Moving the Needle”, which covers advocacy happenings around the world.
  • Diabetes Hands Foundation (diabeteshandsfoundation.org ) – a non-profit organization which offers Diabdhf-logoetes Advocates (diabetesadvocates.org), whose mission is to connect people touched by diabetes for positive changes, so that nobody living with diabetes ever feels alone.  They offer a weekly advocacy newsletter, collaboration in advocacy initiatives (such as Spare a Rose, Save a Child – SpareARose.org), scholarships to attend diabetes conferences, micro-grants to support diabetes advocacy projects, inspiring advocate stories and much more.
  • DiabetesMinediabetesmine-logo (www.healthline.com/diabetesmine) is, as they say, a “gold mine of straight talk and encouragement.” In the advocacy world, Amy Tenderich and Mike Hoskins report on FDA talks with the diabetes community, the cost of insulin, access to insulin worldwide and much, much more.

AND THEN … there is advocacy that has NOTHING to do with diabetes.  You could choose to be involved in causes that touch your heart or your family or your pets or the environment. Dig around the web for groups that advocate in the area of your passion … or start your own crusade.

I had the opportunity, as a scholarship winner to the DHF MasterLab Advocacy 2016, to hear Scott Johnson and host of  Diabetes Social Media Advocacy Live DSMA open the meeting with a talk about embracing
your inner advodsma-live-logocate.” He says we all have a “fire inside us … and that life with diabetes is a huge puzzle with missing
pieces.  By exploring and challenging our ‘puzzle view’, we can truly make a difference."So, as he says, “When you feel something click into place, or you notice a tug of curiosity, or a surge of frustration... pay attention! That is your fire talking to you, and it’s hungry.  Just take it all in, then follow your fire and feed your fire.”  Maybe it’s just a path for you to become aware.  Maybe it’s a call to action to share with others. Just maybe it’s a call to take some action.  Be sure to listen to it and follow it, wherever it takes you.Let us know where it leads you!