2019 Advocates for Arthritis


I got back the other week from a whirlwind trip to DC with the ACR. I’ve been participating in the American College of Rheumatology’s annual Advocates for Arthritis event off and on since 2009.

If you haven’t heard of it, check it out. I look forward to it every year but honestly, it also kinda breaks my heart that I am selected to attend every year. The goal of the program is to train new patient advocates; that I am chosen year after year and that I’m typically the only patient from NC makes me think that I’m also usually the only NC patient who applies.

NC patients, as much as I love this event, I’d LOVE for you to get me wait listed so you can have this experience!

Anywho. I flew in on Sunday morning and had some time to play. I walked to the Mall…

And then I tried a Lime scooter for about a minute/100 feet. My feet were starting to hurt because I wore sandals vs tennis shoes but I realized real fast that I had no business riding a scooter in bad shoes, no helmet and nobody to call 911 when/if I took a tumble. To the people who witnessed me careening out of control for about 100 feet, you’re welcome.

I met up with my Philly sister, Kelly, for a nice dinner and then hit the sack early.

Monday, we met our teams and got trained on the issues we were there to discuss.

I was paired with a rheumatologist, a nurse educator and three rheumatology fellows.

The issue training is always fascinating to me, I have learned a lot over the years about different aspects of legislation that affect the community. It’s been especially interesting the past few years as we’ve had to understand how to adapt in a highly partisan environment. Read: find a middle ground.

Our talking points this year were:

-a clear and transparent step therapy exception process

-addressing the rheumatology workforce shortage

Our group met after the education briefs and made a quick plan of who would speak to what, who had personal stories, who may have had previous interaction with the member we were meeting.

The next morning, our day started with a 9:30 meeting with an NC Senator. We were booked solid until lunch and then we had a 3 hour break.

If you’re ever in DC and want to go into the Gallery, you have to have Gallery passes. Your local offices can give these to you, there’s no cost. So for part of our break, we went into the Senate Gallery for awhile. It was a slow day and kinda boring but I was happy to sit, rest my joints and enjoy some taxpayer funded AC.

All in all, a great trip! I hope to either be there next year or live vicariously through whichever NC patient decides to apply and bump me!

3 responses »

  1. Amanda, I was in DC at roughly the same time you were. I rented a bicycle and took a near header around the Jefferson memorial. Now as I recall, it was someone on a lime scooter that sent me flying. could it be??? 🙂

    Thank you for representing us.

    On a second notion, check out RDBlog Week. We woudl love to have yuo blog with us next week.

    Here is the explanation

    About 2019 RDBlog week – https://www.radiabetes.com/about-2019-rdblog-week/

    2019 RDBlog week signups – https://www.radiabetes.com/2019-rdblog-week-sign-up-page/

    2019 RDBlog week prompts – https://www.radiabetes.com/prompts-for-2019-rdblog-week/

    I hope you get the opportunity to join us.

    • Oh gosh! I hope you’re ok!! I was right at the Senate buildings so not guilty but it would’ve been fun to see you! Yes to blog week, I’ll sign up tomorrow!

  2. Your ability to be an RA Advocate despite mourning your Molly and having flares inspires me to consider re-opening my RA blog. My skill is much less than yours, and my RA is much less dramatic than most PRDs but is non-the-less horribly chronic. How do I blog that?

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