Dipping my Toe in the Advocacy Pool

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I’ve had diabetes for almost 24 years.  I spent most of that time trying to blend in,  not bringing attention to my diabetes (from diagnosis at age 9 all the way through my early 20’s).  Starting my blog almost 5 years ago was a huge step in sharing my diabetes with others.  Thanks to blogging, I found out about the Diabetes Online Community (DOC).

So many wonderful things have resulted from the DOC and blogging.  I was able to find support through both of my pregnancies and then I was able to share my story, first through DiabetesSisters’ blog and then through a published book.  I was able to share my story through Diabetes Mine and Diabetes Daily, and hope that my experiences could help others who are struggling, either with recent diagnosis or a new chapter in their life (pregnancy for example).

I have recently joined the IDF’s Blue Circle Voices group and it’s been great to hear how so many people are doing great things to advocate for people with diabetes to make their lives just a little bit easier across the globe.  Life with diabetes will never be easy, but access to care and technology advancements can definitely help.

While sharing my story might help a few people who are going through something similar, it isn’t really getting myself out there to advocate for better insulin prices or affordable healthcare or CGM coverage.  Sure, I’ve done the JDRF Walk’s for the Cure and raised and donated money for JDRF but I’ve never really spoken up about the need to change (except for writing my blog).

So when Shelby from Diabetic Foodie approached me to join her to talk to our Congressman on behalf of the American Diabetes Association, I jumped at the chance.  I met Shelby through our local DiabetesSisters’ group.  She had previously attended ADA’s Call to Congress last March and the ADA has asked her to continue her advocating throughout the year which included meeting with our representatives during the August recess.

We met with a staffer for Congressman Brat, who represents the 7th District of Virginia.  She was very welcoming and engaged.  Shelby and I shared our stories about life with diabetes, representing both type 1 (myself) and type 2 (Shelby).  We then proceeded to ask for certain things for the upcoming 2018 fiscal year:

  • Allocate $2.165 billion for the National Institutes of Health’s National Diabetes and Digestive and Kidney Disease (NIDDK)
  • Provide $185 million for the Centers for Disease Control and Prevention’s (CDC) Division of Diabetes Translation (DDT)
  • Support $24 million for the National Diabetes Prevention Program
  • Reauthorize the Special Diabetes Programs (SDP) for five years at $200 million per program per year before the program expires on September 30, 2017

It was interesting to be a part of this discussion.  I had never heard of several of these programs so it was just as educational for me as the staffer. According to the ADA the investment in NIDDK…

is needed to advance the nations’ efforts to develop new and superior treatments, enhance disease detection and management, improve the prevention of diabetes and its complications, and ultimately discover a cure.

I want all those things too!  Please make that happen!  The SDP has two parts, the Special Diabetes Program for Indians (SDPI) and the Special Statutory Funding Program for Type 1 Diabetes Research (SDP-type1).  Obviously, I zeroed in on the SDP-type 1 since I have type 1 diabetes.  The SDP-type funds critical research at NIH that is working towards breakthroughs and a cure.

Besides asking for money and sharing our stories, we also left some brochures further explaining the programs and the burden and costs of diabetes in the US and Virginia (my state).  I’m sure a lot of you have heard these facts before but it is crazy to think that 1 in 11 Americans has diabetes.  It’s crazy that the average price of insulin has increased THREE times between 2002 and 2013.  It’s crazy that diabetes and pre diabetes costs $322 billion in the US.  Wouldn’t it be great if the money the ADA is asking for for these programs ultimately leads to a cure and helps eradicate these high costs?!

Overall, I had a lot of fun.  I was happy to share my story and I learned a lot about what the American Diabetes Association is doing.  I’m glad Shelby asked for me to be a part of this and I look forward to hopefully getting more involved in the future.  While the pessimist in me doesn’t know how much of an impact I made, I was glad to learn that this is happening throughout the country and hopefully the advocates working on behalf of the ADA will make a small impact to help those living with diabetes.  It was a small starting point for me towards calling myself a diabetes advocate but it has me excited to do more.  I’ve dipped my toe into the advocacy pool and now I’m ready to jump in for some more fun!


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