Advocacy on the Hill

All of the DPAC Champions before going to the Hill

Later this month I will have lived with Type 1 Diabetes for 27 years…  And I’ve always said that if I was destined to have an incurable disease, at least it’s one that I can control (for the most part) and I’ve also always said that I want to do something positive with this disease – raise awareness, share my story, help newly diagnosed patients – SOMEthing.  And I’ve been fortunate to have been able to do all of those things on multiple occasions. But this past week I took it to a new level and am still SO fired up about it!

I was invited to attend a policy training event in Washington, DC, hosted by Diabetes Patient Advocacy Coalition (“DPAC”) that was held last week.  It was a mixture of people who lived with Type 1 or Type 2 Diabetes, parents of Type 1 children (young and grown), Dietitians who wanted to learn how to better help their patients, and heck there were some people who had no direct connection to diabetes but just wanted to help!   I went into the weekend with no real expectations because I truly had no idea what to expect.  But I can’t say enough that it by far exceeded any assumptions or expectations I may have thought would happen.

We spent the first day and a half in training.  Everything from learning how to speak with representatives on Capitol Hill, to learning the Bills that we were there to ask them to support.  But one of the biggest lessons was how to share our story.  We all have one.  No matter which category we fall into – living with diabetes or caring for someone who lives with it, etc.    The issue initially for me, personally, was how do I summarize 27 years of living with Type 1 diabetes?  We were encouraged to have a 30-60 second story that you are prepared to share at any point – whether it’s with the Representatives themselves, or with someone in the hotel elevator that asks why we’re in town.  By nature, I tend to overthink everything.  Do I talk about how when I was diagnosed at age 17 that I was told by the admitting physician that I should never have children, yet here I am with 3 healthy boys?  Or do I talk about the time I passed out with a low blood sugar from moving one weekend?  Or about the time when I was in my 3rd trimester with the twins that I received a letter from my insurance company telling me I had to switch from Humalog to Novolog because it was more “cost effective”?  Ugh.  Don’t get me started on that one …. (by the way, I also learned during this training that there is a term for that and it’s called “Medical Switching”.)

I decided I wouldn’t go with a set “script”, per se.  I have plenty of stories in my wheelhouse, but I decided that I would go where my gut said I should go depending on who the person on the other end of the conversation ended up being.  In the end, it gravitated toward just how freaking expensive it is to live with diabetes.   And how wrong it is that we spend SO much out of pocket yet many of us still can’t get all of the necessary supplies needed to take the best care of ourselves that we can.  And how I have had to make employment decisions based on the availability and cost of insurance coverage, and how in the past I have had to give up my dream of being a stay at home mom because I have to provide insurance for myself and my family while my husband is currently unemployed.  His dream is to be self-employed, which I am 100% supportive of, but that means that I will likely need to continue working to provide insurance.

So in the training we mainly focused on two bills that we would be discussing with the Representatives (and/or their Staff Members):

2103: Affordable Insulin Approvals Now Act. This is a bipartisan bill that would aid in speeding up approvals of lower-cost generic, and “follow-on” insulin products in order to help lower costs of the life-saving drug. Insulin has experienced a price increase of more than 600% (yes, you read that right – SIX HUNDRED PERCENT) over the last two decades in the U.S.  Today’s legislation would lower the price of insulin by promoting competition and bringing lower-cost generic products to market sooner – specifically by requiring FDA to continue reviewing generic insulin applications even after the agency’s currently planned March 2020 cut-off date.

H.R. 1840 and S. 814 Expanding Access to Diabetes Self-Management Training Act of 2019. This bill will reduce barriers and improve Medicare beneficiary access to Diabetes Self-Management Training (“DSMT”) in some of the following ways:

  • Allows the initial 10 hours of DSMT during the first year to remain available until fully utilized.
  • Allows 6 hours of DSMT in subsequent years, up from 2 hours
  • Removes the restriction related to coverage of DSMT and Medical Nutrition Therapy services furnished on the same day (currently Medicare patients have to pay two co-pays to go to their provider once for the DSMT and again for nutrition – when we all know that diabetes and nutrition go hand in hand, so they need to be done at the same time. There is also issues with transportation, so many Medicare patients would not be able to go to two different appointments, much less be able to afford two back to back co-pays.)
  • Removes the co-pay and deductible requirements for these appointments.

We also asked the Representatives and/or their Staff Members if they would consider joining the Diabetes Caucus, which is the largest Caucus currently in Congress.

I think we can all agree that insulin affordability is a huge problem – and if you don’t know what I’m talking about, Google it … it’s a thing and it’s out of control.  And training is key – there are people that once diagnosed, they do not have the resources available to know how to manage their disease.  If properly managed, it is completely possible for someone to live a long and normal and healthy life.  But if left untreated, and unmanaged, there are almost certain catastrophic results.

I am incredibly proud and blessed to have been invited to attend this training and to have the opportunity to have spoken with the many staff members and my own Congressman during these few days.  Every single staff member we met with shared a personal connection he/she had with diabetes (parents, college roommate, another family member, etc.)  And that is encouraging (that they “get it”) but also discouraging because it reinforces just how many of us are affected by it – either directly or indirectly.

The best conversion for me personally, was with my home district’s Congressman, Van Taylor.  Honestly, I went into the meeting without a lot of knowledge about him, or what he stands for, but left with a huge amount of respect for him. (This is not an endorsement, just sharing my own personal opinions).  We sat down with the Congressman and shared our stories. He focused on me, as I was the only one in the room who was one of his Constituents and at one point he said that it was one thing to hear these facts and read about the insulin crisis on the House floor, but he said, “It is really difficult to look in your faces and see the emotion and it makes this more real.”   My eyes started to well up because that was the moment I realized we CAN make a difference. And we DO have a voice.  It may not seem like it but it can easily have a snowball effect.  Just have to speak up. And share our story.   It DOES make an impact.


About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 21 years; most recently on the Medtronic pump and Dexcom CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
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4 Responses to Advocacy on the Hill

  1. Rick Phillips says:

    I sent my support messages to my representative in Congress. I have to admit none of them care much, but I sent them in.

  2. Pingback: 2020 JDRF Type One Nation | No More Shots for Shannon

  3. Pingback: DPAC Champion | No More Shots for Shannon

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