Tuesday, March 27, 2018

ADA Call to Congress 2018

A few days ago, our oldest daughter and I had the pleasure of attending the American Diabetes Association 'Call to Congress', held in Washington, D.C..  And wow!  What a wonderful opportunity it was to speak, share and to listen to over 200 other advocates as they told their own personal stories of living with diabetes.

There are these amazing moments in our lives in which suddenly you realize that you have an ability to communicate not just for yourselves but for the greater world at large.  This was one of those moments. 

As we walked into a meeting with Congressman Mike Bishop, 8th District, of the state of Michigan, I could sense an exciting chance to help further teach what we as patients and families live with through having been diagnosed with T1d.  While we have learned much on our journey and do our best to maintain health, there is nothing more that we would like to have than a CURE.  With this in mind, our meeting started and in a few moments, I watched as my daughter calmly begin to speak. 

This is what she shared:

"Diabetes is a disease that goes with me wherever I go. It is something that I can't ignore or take a day off from.  By looking at me, you might not realize that I am a person living with diabetes.  You would also not know that my little sister and many of my friends have diabetes.  It is truly an invisible disease.  It also does not discriminate and anyone, at anytime, can be diagnosed.  I have watched my friend become diagnosed and I have had to be the support system for them.  This is something that no one has asked for and something that no one deserves.  This chronic and life-threatening disease needs a cure.  That is exactly why research funding is so very important".

Then, she casually pulled out her blood sugar meter and begin the process of checking her glucose.  Congressman Bishop spotted the attached car key and questioned why the two were paired together.  Our daughter explained that when she drives, she must check her blood sugar.  This was a surprise as it was not widely understood that checking happens beyond mealtimes, but also, during sports, activities, parties, holidays, at night and well, even at a Congressman's office. 

The story she shared wasn't overly dramatic but it was honest and authentic.  Checking glucose happens every day, multiple times throughout a day.  It has become such a routine event that we rarely think about the process but in this setting, watching a pretty, well-spoken, young person calmly use a needle lancing device on their finger, only then to squeeze out a blood droplet, felt barbaric.  Even when she correlated the data to her technologically advance Continuous Glucose Monitor (CGM), it still felt like not enough in terms of progress had been made.  There should be more (and better) diabetes treatments.  Where are the implantable sensors?  The true artificial, fully automated pancreas? Research is only as good as the funding it is provided. 

Within the room, there was an empathetic silence in understanding that life with diabetes is difficult.  As she finished speaking, smiling through her testimonial, the reality became even clearer; people living with diabetes need better. Each head around the table nodded in support of improving care and helping our patients and families.  Yes, we can do this! We can make change.

When the meeting ended, we shared our thank you's and exchanged our good-bye's for the time being.  There is more work yet to be done and we will carry on with hope that we are continued to be heard.  You can join our advocacy efforts by attending your own home-town meetings and through sharing your story.  I would love to hear back on your involvement.

No comments: