2017 Advocacy Social Media Toolkit

Welcome, kidney advocates! This toolkit will help you extend your advocacy outreach using social media during the 115th Congress.

This year’s social media theme, “My Kidneys, My Life,” aims to send a strong message to the lawmakers that kidneys are vital organs that sustain life. Help make it a success by using social media to garner attention from lawmakers and the public.  Curious how to find your legislator’s social media account information? — click here.

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Hashtag: #MyKidneysMyLife

Use the hashtag #MyKidneysMyLife with all your social media activity during 2017 to help us build awareness around the hashtag, and track responses and outreach to government officials.  Find your legislator’s social media account information here.

 

For some basic tips, watch Kidney Advocacy Committee (KAC) liaison Rahmeka Cox’s video:

Cox Video

Message Points

The following are four actionable items we’ll be asking the lawmakers for. Use these message points in your social media activity.

Living Donor Protection Act (H.R. 1270):

Prohibit discrimination in the availability, coverage limit, or price of life, disability or long-term care insurance for living donors and add living donation to the Family and Medical Leave Act (FMLA).

Improve Chronic Kidney Disease (CKD) Care (H.R. 3867):

Accurate and timely diagnosis of chronic kidney disease saves lives and reduces healthcare costs.  Serve as an original co-sponsor on imminent legislation that seeks to establish a pilot program to help improve care, and outcomes, for patients with CKD.

Appropriations:

Increase Fiscal Year 2017 funding for the Center for Disease Control’s (CDC) Chronic Kidney Disease Program, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Health Resources and Services Administration’s (HRSA) Division of Transplantation (DoT).

Immunosuppressant Coverage by Medicare:

Medicare pays for the transplant and immunosuppressive drugs for 36 months post-transplant, but coverage of these critical medications stops unless the beneficiary is Medicare-aged or Medicare-disabled. As a result, they often face the challenge of finding affordable coverage that allows them to obtain medications required to maintain their new kidney.

Twitter Tips
  1. Follow each of your lawmakers on Twitter. Find your legislators’ social media handles.
  2. Follow the National Kidney Foundation (@NKF).
  3. Whenever appropriate, tag your lawmakers in your tweets, especially tweets that thank them for allowing a visit with you.
  4. The text of your tweet must be under 140 characters. New: Twitter’s character limit now excludes space for link and/or photo, so you can add those freely even after the character count of your tweet has reached 140.
  5. Add photos and videos of your visits with lawmakers!
  6. Identify your hometown and use a hashtag like #constituent to identify yourself as a resident in their district or state.
Sample Tweets For Legislative Action

1. Take a photo of yourself holding a sign that answers the following question: How did kidney disease affect/change your life? (Example: “I have been waiting 5 years for a lifesaving kidney transplant.”)

2. Tweet the photo at your legislator using the hashtag #MyKidneysMyLife and tie it to one of the below statistics:

  • An estimated 30 million Americans have kidney disease.
  • Over 660,000 Americans have irreversible kidney disease.
  • Over 89,000 people with kidney failure die each year.
  • Over 100,000 Americans are waiting for a kidney transplant.
  • Over 19,000 Americans received a kidney transplant in 2016.
  • Over 5,600 of Americans received a kidney transplant from a living donor in 2015.

Or use a state-specific state from the fact sheets on our web site:

3. Or use these the following additional tweets:

Facebook Tips
  • Post photos and videos of you and your advocacy activities on your Facebook wall.
  • When sharing to your own wall, tag your lawmakers in the post by using the “@” symbol before typing their name (or the name of their Facebook page).
  • Post photos and videos to the Facebook walls of your lawmakers when applicable.
Sample Facebook Posts for Legislative Action
  1. I’m supporting kidney patient advocates with the National Kidney Foundation to urge @[YourREP/SEN] to improve early detection, care and outcomes for people with chronic kidney disease. http://bit.ly/22u1q39 #MyKidneysMyLife
  2. I’m supporting kidney patient advocates with the National Kidney Foundation to urge @[YourREP/SEN] to support the Living Donor Protection Act (HR 1270) and help protect living organ donors. http://bit.ly/22u1q39 #MyKidneysMyLife
  3. I’m supporting kidney patient advocates with the National Kidney Foundation to urge @[YourREP/SEN] to support organ transplant patients by extending Medicare coverage of immunosuppressant medications indefinitely. http://bit.ly/22u1q39 #MyKidneysMyLife
  4. I will be meeting with @[YourREP/SEN] to tell him/her that kidney disease should be a national priority. http://bit.ly/22u1q39 #MyKidneysMyLife
  5. I’m posting to push @[YourREP/SEN] on kidney disease funding initiatives. If you don’t know why this is so important to me, [INSERT PERSONAL STORY]. You can also help by becoming a kidney disease advocate: http://bit.ly/2lsTJjE #MyKidneysMyLife
  6. I am honored to help raise awareness about kidney disease with the National Kidney Foundation in Congress. Kidney disease is personal to me. I want to be heard and affect change for those suffering from kidney disease. http://bit.ly/2lsTJjE #MyKidneysMyLife
  7. Thank you @[YourREP/SEN] for agreeing to support [YOUR ISSUE] and kidney patients. http://bit.ly/2lsTJjE #MyKidneysMyLife
Images

It’s best to use your own photos and video in your social media activity. If you need an additional supporting image, you may download the one below.

mykidneysmylife
Video Tips

We encourage you to take videos with your smartphone when participating in district or advocacy events.  Please load your videos on Youtube, share them with your legislators on social media and email a link of the video to Andrew.Fullerton@kidney.org.

  • Filming from home:
    • Write out your comments prior to filming
    • Practice, practice, practice! It is hard to keep it short and be clear if you don’t
    • Speak clearly so that it is easy to understand on a computer or cell phone
    • Hold your phone sideways when filming
    • Try to record videos in quiet, well-lit areas and be aware of your surroundings.  Can you include a dialysis machine in the background?  Are you with your family?  Are you in a dialysis center or hospital?
    • Make sure to make it personal to you and tug on those heart strings
    • Creativity is encouraged!
    • Use #Mykidneysmylife when you send these to your legislators via Twitter and Facebook!
  • Filming a video with your lawmakers:
    • Ask your lawmaker for permission to take and share video of your meeting or interaction.
    • Assign someone to take video during your conversation.
    • Ask your lawmaker to pose for a photo after the video.
    • Consider including other advocates in your video with the legislator.
    • Try to record videos in quiet, well-lit areas and be aware of your surroundings.
    • Hold your phone sideways when filming
    • Use #Mykidneysmylife when you send these to your legislators via Twitter and Facebook!

Keep your message short and simple.  Here are some sample questions and comments you can answer in your videos:

  • Include tour name and hometown.
  • What is your story with kidney disease?
  • Tell lawmakers to co-sponsor the Living Donor Protection Act, CKD early detection and management legislation, and appropriations for CKD research and treatment programs.
  • How does kidney disease impact your state or district?  How many kidney disease patients are there?
  • Why did you decide to become an advocate?
  • What brings you to Capitol Hill or other event today?
  • What do you want lawmakers to know about kidney care?
  • Describe your visit with your lawmaker.
  • Thank lawmakers for their time and support.
Photo Tips

We encourage you to take photos with your smartphone when participating in district and advocacy events.

  • Ask your lawmaker for permission to take and share photos of your meeting or interaction.
  • Assign someone to snap action photos during your conversation.
  • Ask your lawmaker to pose for a photo after the conversation of meeting.
  • Take a photo at the location of the event you met your legislator.
  • Take a photo with a group of advocates.
  • Take a photo outside the door of your Member’s office or building next to their name plate and state flag.
  • Try to encourage your lawmaker’s participation in the photo. This will increase the chances that his/her office will share the photo with constituents.
  • If your lawmaker cannot be part of the photo, be sure to include their name (s) in your photo’s description and written message on social media.
  • Write a short advocacy message on a piece of paper and take a photo while holding the paper.

Keep your message short and simple.  Some suggestions:

  • What impact does kidney disease have on you, your state, or district?
  • Write a statistic down to illustrate your message or story.  How many people have CKD or a transplant in your state?  How many visits/hours to a doctor or dialysis center do you make per year?  How much do your medications cost per year?
  • Why did you decide to become an advocate?
  • What brings you to Capitol Hill or other event today?
  • What do you want lawmakers to know about kidney care?
  • Describe your visit with your lawmaker.

See #mykidneysmylife on Twitter to see what others have done!