Soon, your member of Congress will be on recess from Washington, D.C., and available to meet with constituents in his or her home office. This is a great opportunity to meet with your Congressperson or Senators to discuss important legislation that affects patients and families living with polycystic kidney disease (PKD). I have done this many times, and I have a few suggestions based on my experience.
BEFORE YOUR MEETING
- Make your appointment early. Remember that before your Congressperson comes home, he has made plans to hold other meetings outside of his office (groups, speeches, town halls, etc.) and has limited time in his or her office. Call his assistant now and make your appointment as early as possible.
- Send a follow-up confirmation e-mail. As soon as your appointment is set, write to the appointment maker to confirm the date and time of your appointment. Be sure to put it on your calendar. Ten days ahead of the appointment, write to the appointment maker and make sure that date and time are still feasible.
- Be prepared! Make sure you have materials to review with your Representative. You will want to leave a set of these materials behind so your Representative can review them later.
AT THE MEETING
- Arrive Early. Meetings are usually scheduled one after the other, and no one usually gets more than 15 to 20 minutes.
- Avoid political discussion and stay on message. Remember, kidney issues and legislation are bi-partisan and politically neutral.
- Tell your kidney story! This is the most effective way to advocate for your group. I’ve lost five members of my family to PKD, plus my father. I know what I’m talking about. Your story will be remembered for a long time. My Representatives now repeat my story to me when I show up: “Jim, didn’t you just have a transplant in April?”
- Stick to the talking points provided by the PKD Foundation. Use the material to review or make a PowerPoint presentation that stays on track with the materials.
- Don’t forget your ask! Ask your Representative to support legislation, co-sponsor a bill to help get it out of Committee or support the idea.
- Take a picture. Politicians love to be photographed with their constituents.
- Be mindful of your statements. Your goal is to become your Representative’s go-to person on kidney and PKD issues. You want to build trust to the point where they say, “What does this constituent have to say about this?”
AFTER THE MEETING
- Follow up with a thank-you e-mail. If there were unanswered questions, get answers from the PKD Foundation and follow up with your Representative.
- Use social media! Post your pictures. Tweet your Representative a thank you. Let people know that you met with your Representative and how great the meeting was.
- Stay active online. When you see PKD or kidney issues posted online, engage. The PKD Foundation provides form letters on issues that affect patients and families with PKD. Fill those out and send them to your Representatives.
- Keep your Representative up to date on all important PKD matters. Find their contact information by looking them up online. Your Representatives have webpages with email addresses, Twitter and Facebook pages.
Good luck and remember: You are a great advocate. You are living with these issues and you have the power and the means to educate your Representatives.
Jim Myers is a longtime advocate for PKD and PKD Foundation. After nearly four years of being on dialysis and waiting for a kidney match, Jim got the call earlier this year on April 26. He received his transplant shortly afterward, and continues to advocate for PKD-related legislation and the Living Donor Protection Act.