January 18, 2019

Advocates for Arthritis Takeaway: Tips for Patient Advocacy

  1. Come with your story fully prepared!
    • Your story should include everything you’ve been through due to your rheumatic disease. Some good things to think about are your diagnosis, any difficulties you’ve faced, and where you’re at today.
  2. Look over the material you’re given
    • Have a decent understanding of the issues you’re bringing to Congress that day. In my experience, you truly don’t need to know anything in depth, as the physicians I went with were fully informed and ready to talk about the bills and their background. However, it’s always nice to know basic facts, so you aren’t completely lost during meetings
  3. Try to link your experiences to the issues you’re bringing to the Hill
    • The night before you’re slated to go to the Hill, look over the issues you’re advocating for/against and think hard about whether or not you’ve ever experienced any of those issues in your healthcare process. For example, this year we lobbied against step therapy, so I brought in my own story about how step therapy affected what medication I had to use. Congress members really take these kinds of stories to heart, and at the end of the day, these are the things they remember as they go in to vote! Tug on their heartstrings.
  4. Wear comfortable shoes and carry a comfortable bag
    • You will do a decent amount of walking, so it’s imperative that you are comfortable for the entire day! Especially considering your health is the reason you’re advocating in the first place, your health and comfort are the number one priority!
  5. Bring water, small snacks
    • Another reminder that it’s going to be a long day. It’s important to refuel and take care of your body. Even if you do hydrate and refuel throughout the day, your body will feel the pain and exhaustion by the end of the day. So, by taking care of your body throughout the day, you are being proactive in ensuring that you’ve done everything you can to prevent additional pain, discomfort, and exhaustion.
  6. Check security requirements
    • Before you head out, try to find out about the security requirements for the buildings you’ll be visiting. Once you figure this out, pack your day bag accordingly!
  7. Post on social media as you go
    • If I’m not mistaken, most (if not all) Congress members have at least one social media account. So, take advantage of this! Ask your representative to take a picture as you’re leaving their office. Then, write a caption, tag the representative and/or their aides, and post the photo. It’s simple, fun, and a great way to garner more support for whatever you’re asking.
  8. Follow up
    • After your adventure is over, don’t forget to compose follow up emails to the representative and/or their aides. These follow-ups are especially important if you made commitments to provide additional information or something to that regard. Congress members hear from countless constituents every day, so it’s imperative that you at least thank them for meeting with you and remind them about what you discussed!


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