2011 JDRF Government Day Takeaways

Picture of the MN JDRF crew on Capitol Hill
Shelley, Debbie, Scott, Camile, Ann

Did you know there is a whole section of JDRF that deals with Government Relations?  Me either – at least not until this trip.

When I think JDRF, I always think about fundraising and walks, stuff like that.  I didn’t think about people keeping an eye on government stuff.

It makes sense though, if you think about it.  There are many decisions made on Capitol Hill that directly impact us, positively or negatively, in our daily lives with type 1 diabetes.


As I learned more about the many things the JDRF is, and has been, involved in, I was impressed by the scope of their vision.  Beyond government relations, the JDRF is actively involved with the NIH (and many others), together funding a number of important studies.

We listened to a great presentation given by Judith E. Fradkin, M.D., Director of Diabetes, NIDDK, NIH (that’s a mouthful!) and Richard Insel, M.D., Cheif Scientific Officer, JDRF, about some of the active partnerships and how the NIH & JDRF research is making progress at all stages of type 1 diabetes (preventing onset of autoimmunity, stopping active autoimmune attack, preserving beta cells, improving glucose control, restoring beta cell function, and dealing with complications).

If you’re looking for hard data here, numbers and figures, I’m the wrong guy.  But just for kicks I’ll throw out a really complicated phrase from one of the slides:

JDRF and NIH Research: How Does the Microbiome Confer Immunoregulation and Alter T1D Susceptibility?

I have no idea what that means.

I found an old report on the NIH website from back in 2005 and a new video with Dr. Judy Fradkin from the NIH that was taken at this years JDRF Government Day event.   They are totally unrelated to each other, but does show that NIH & JDRF were working closely together back in 2005, and they are still working closely together today.  You can tell from her video, Dr. Fradkin (who still sees patients, by the way) is excited and engaged with us.

Back to advocacy

After spending two days learning about some of what the JDRF is doing, who they are working with, and what the messages for our representatives were, we went out to our representative’s offices to ask for their support.

I got to hang out with the group from Minnesota, and watch them in action.  They were a blast to be with, and once we got into those representative’s offices, they handled their business – on behalf of all of us living with diabetes.

I don’t think us average folk out here appreciate the gravity of some of the things being advocated for.  For example, what do you think will happen if the FDA’s budget is cut?  We already think they are slow, right?  Imagine if they had less people and fewer resources?  Wouldn’t that slow things down even more?

These things all feel so far away from us, and they are, I guess.  But it doesn’t take long for some of these decisions to affect our lives.

They Have NO Clue

We didn’t get to meet with any actual members on The Hill.  We met with aids from different areas of their offices.  While I was very impressed with them in general, most of them didn’t know the first thing about life with diabetes.  It’s terrifying to think about the power of a signature when they are so disconnected from what we deal with on a daily basis.

With that in mind, it is our job to educate them and let them know where we need their support, and how a decision will help or hurt us.

Some People Enjoy Government

I do not enjoy government stuff.  While the atmosphere around all of the old buildings is pretty cool, I found the inside of the two buildings I saw to be very boring and sort of sterile.  If it weren’t for the company of the Minnesota JDRF gals, I wouldn’t have enjoyed it much at all.

But stepping back from the event a bit, this work is necessary.  Critical even.

These politicians are a different breed to me, and it’s weird to watch them be interested in what we have to say – but only because it’s their job.  I think about how many different groups come in each day to pitch their story, and whether any of these people think about us after their work day is over.  Did we make an impression?  Or were we just another group of activists?

Would I Do It Again?

Of the four days I spent in D.C., two of them were a lot of fun, and two of them were a lot of work.

The fun days were listening to the presentations, learning about everything that the JDRF is involved in, and getting to know some of the other volunteers who work so hard for us.

The not-so-fun days were the two days spent on The Hill. They were exhausting, and not much fun at all (except for hanging out with the MN gals). We ran from meeting to meeting to meeting, with lots of waiting in between.

These trips are hard for me, taking time away from my family, not being able to work on stuff that actually helps pay the rent, and dealing with out-of-pocket expenses that, while often reimbursed, still have to come out of the “rent and groceries fund” for a while.

But if I have the pleasure of being invited back again next year, I will enjoy the two days of fun, and proudly sacrifice two days on The Hill to help educate and advocate.

It’s the least I can do.

**Disclosure: JDRF paid for my food, travel, and lodging.  They did not place any expectations or restrictions on my writing about the trip, and have no editorial control of what I write about it.

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Scott K. Johnson

Patient voice, speaker, writer, advocate, and Senior Community Manager at Blue Circle Health. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent my employer’s position. Read more…

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