The National Kidney Foundation’s Patient Advocacy Initiative

Who are “People Like Us?”

The power of any movement is the force behind it. The force behind “People Like Us” is YOU – people affected by chronic kidney disease. To strengthen and unify the voices of the more than 20 million Americans with chronic kidney disease (CKD), the National Kidney Foundation (NKF) established “People Like Us.” Its aim is to educate, empower and encourage powerful, effective advocates on issues related to your health care.

As the largest and most influential group of patient advocates representing chronic kidney disease and the organ donation and transplantation communities, “People Like Us” members are engaged in the public policy process, educating elected officials and government agencies at the national, state and local levels. Members paint an accurate and compelling picture for the media and the general public by showing them the faces of chronic kidney disease. “People Like Us” includes the diverse perspectives and wealth of expertise provided by the NKF's constituents:

The Patient and Family Council works to ensure that people with kidney disease receive the best care possible and promotes patient and family involvement in life enhancing programs.

The National Donor Family Council serves as an advocate for donor families and works to increase the sensitivity and effectiveness of the organ recovery process.

The transAction Council promotes a better quality of life for transplant recipients by providing support, information and programs on education, fitness and research.

The NKF also offers many supportive and educational resources for living donors and potential donors.

“People Like Us” members learn to effectively communicate their personal stories and to participate in activities related to the public policy initiatives the Foundation addresses. “People Like Us” representatives establish and maintain contact with Members of Congress, their staffs and state and local officials through phone calls, letters, and personal visits.

**What is Advocacy?**

ad•vo•ca•cy (ăd'və-kə-sē) n.

The act or process of advocating or supporting a cause or proposal.

The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.

What makes an effective advocate?

Commitment to cause
Constant and consistent communication and relationship building!
Persuasiveness, persistence, patience!
Flexibility and resourcefulness

Why is Patient Advocacy Critical for Making Lives Better?

“People Like Us” members have important, compelling personal stories to share with public officials, the media and others.

It is these very stories that lead to legislation being introduced, to support for your cause or to awareness about kidney disease prompted by a newspaper article or television report. Patient advocates can and do make the difference! You play a crucial and invaluable part in obtaining support for issues. No one can tell your story better than YOU! Elected officials want and need to hear from YOU! Just as legislators have the power to influence your lives by the laws they pass, you too have the power to influence theirs because you vote!

Why Get Involved?

The U.S. Congress, state legislators, and city or county council members may not know about the needs and concerns of the kidney community.

The best way to educate them about kidney disease is to make them aware of issues you face, and give them the opportunity to respond. The legislative victories that the National Kidney Foundation has achieved in Washington, D.C. and throughout the country are in large part attributable to the advocacy efforts of people like you - patients and their families. To continue our effectiveness in the Nation’s Capitol and beyond, people like you must play a leading part in the public policy process.

What are the Priority Issues for the NKF?

Some of the public policy priorities of the National Kidney Foundation where action from “People Like Us” are key include:

How Can I Join?

To join “People Like Us” email us at peoplelikeus@kidney.org or call 1-800-622-9010.

Contacting Congress

Who are my U.S. Senators and Representatives?
How do I call my Legislator(s)?
How Do I Write a letter or send an email to my legislator(s)?
Sending email to Congress
How Do I Meet With My Member of Congress?
Testifying Before a Legislative Committee
Influencing the Media

Who are my U.S. Senators and Representatives?

Find out who your U.S. Senators and Representatives are by visiting the Website www.kidney.org/takeaction, where you will need to type in your zip code. This Website also provides contact information for Washington, D.C. and district offices. If you do not have internet access, call the NKF Government Relations office at (800) 889-9559 and we can help you identify your Members of Congress.

How do I call my Legislator(s)?

elected officials pay attention when constituents take the time to call and express their views on an issue. Calling may be quicker and easier than writing and, if an issue is moving quickly, it may be the only way to get your message through in time to make an impact. All House and Senate offices can be reached through the Capitol Switchboard, (202) 224-3121, if you do not know Congressional office telephone numbers.

Ask to Speak with the Aide who Handles Health Care Issues -- Leave a voicemail message with the health care aide if they are not available.
Identify Yourself – Let them know that you are a constituent and where you live.
State the Purpose of Your Call - Prepare you remarks before your call. If your call pertains to a specific piece of legislation, be sure to identify it accordingly; e.g., House Bill (number) or Senate Bill (number).
Be Concise - State the reasons for your support or opposition to a particular issue. Ask for your legislator’s position on the issue, and ask for a written response to your telephone call.
Share Information – Please notify the NKF’s Government Relations office (advocacy@kidney.org or (800) 889-9559) or “People Like Us” peoplelikeus@kidney.org staff and let us know you have contacted your Representative or Senator (s) so that we can coordinate our efforts.

A sample message might be: “My name is Jane Citizen and I live in Independence, Iowa. I had a kidney transplant 5 years ago and I must take immunosuppressive drugs so that my body will not reject the new kidney. Unfortunately, Congress only allows these drugs to be covered by Medicare for 36 months. H.R. 2051 would extend that for the life of the transplant patient. Please let me know how the Congressperson ________ will vote this week on H.R. 2051 when it is included in the upcoming Medicare reform package. My address is 145 Main Street, Independence, IA 57575 and my telephone number is: 800-555-1212. Thank you.”

How Do I Write a letter or send an email to my legislator(s)?

Legislators pay close attention to their mail, and letters are an important way for them to learn what issues are significant to the people they represent. In fact, the amount of letters a legislator receives can determine how he/she votes on an issue. So, your letter makes a difference!

Individual letters are the best way to communicate with Congress. However, due to increased security measures, they do take several weeks to arrive, so they are best used to make an initial inquiry of support. If time is important, consider faxing the letter or emailing the office instead.

Address Your Letter Properly:
To a Senator:

The Honorable (Full Name                              )
United States Senate
Washington, DC 20510

Dear Senator (Last Name                             )

To a Representative:

The Honorable (Full Name                              )
U.S. House of Representatives
Washington, DC 20515

Dear Representative (Last Name                              )
State the PurposeUpfront – Identify the issue or specific piece of legislation, e.g., H.R. 1298 or S. 717, in the opening paragraph. Let them know your position on this legislation too.
Be Brief - Address only one issue in each letter and keep your letters to one page if possible.
Be Courteous and Concise - Include key information and personal experiences to support your position. They need to know why this bill is important to you and others with kidney disease. Also, include the action/position you would like the Senator or Representative to take.
Share Information - Please remember to contact the NKF’s Government Relations office at (800) 889-9559 or advocacy@kidney.org or e-mail “People Like Us” peoplelikeus@kidney.org and let us know you have contacted your Representative and/or Senator(s) so that we can best coordinate our efforts.

Sending email to Congress

When addressing an email to a Member of Congress, follow the same suggestions as for a printed letter. For the subject line of your email, identify your message by topic or bill number. If you know the health legislative aide, you can email them directly. Otherwise, there is general mailbox for every office. (Addresses are available at www.congress.org and www.kidney.org/takeaction when typing in your zip code.)

The body of your message should use this format:

Your Name
Address
City, State Zip

Dear (Title) (Last Name),

How Do I Meet With My Member of Congress?

Schedule your visit – a good time to meet is when your state and federal legislators are in their districts. They are often more relaxed and receptive when they are away from Washington, D.C. Many Members of Congress are home on the weekends to meet with constituents or during extended breaks throughout the year.
Contact Your Member’s Office - Call your member’s legislative office or district office and ask to speak to the appointment scheduler. Try to meet with the Member. If he or she is not available, ask to meet with the health legislative or legislative director. You may also want to meet with the director of the district office.
Identify Yourself - Be sure to identify yourself as a constituent.
State the Purpose of Your Meeting - If your call pertains to a specific piece of legislation, identify it accordingly; e.g., House Bill (number) or Senate Bill (number).
If your Legislator is Unable to Meet with you, don’t panic. Instead, ask to meet with the staff person in charge of health care policy. Staff members can be just as helpful if your legislator is unavailable. The staff person will convey your views to the legislator and is usually the individual who will help draft the member’s position on the issue. In the district office, you may also want to meet with the District Director.
Share Information - Please remember to tell the NKF’s Government Relations office (advocacy@kidney.org or (800) 889-9959) or “People Like Us” peoplelikeus@kidney.org that you have contacted your elected officials so that we can coordinate our efforts. NKF will be able to provide you with fact sheets pertaining to the issue to leave for the Member or his/her staff.
Be Prepared - Identify the key items to be discussed and, if you are attending the meeting with others, select one person to be the initial spokesperson and decide which issues/points each of you will make.
Be Calm - Many people are nervous about meeting with their elected officials, especially when it’s their first time. Although this is normal, try to remember that legislators are public servants and that they are voted into office by people like you! Therefore, most Members and their staff welcome the opportunity to meet with and learn about the needs and concerns of their constituents. Your voice is POWERFUL – so speak up and let it be heard!
Be Brief - A legislator may only have a 10-15 minute block of time to meet with you. Therefore, brevity is of utmost importance. Introduce yourself, where you live in the legislator’s district and the purpose of the meeting.
Be Concise - Discuss one issue or piece of legislation. When referring to a piece of legislation, mention the bill number and title. State your position clearly, its potential impact on the legislator’s constituents, as well as the action you would like taken and the time table involved.
Include Personal Stories or Anecdotes - Your personal experience is the best way explain your position.
Try to Get a Commitment – Tell the Congressional member what you want them to do and try to get them to agree on the spot. If you are meeting with an aide, ask them to get back with you about a commitment.
Extend an Invitation - Invite your legislator or his/her staff to tour a dialysis facility, transplant center or research laboratory in their district. Viewing these facilities provides valuable information to the legislator. The NKF can work with you to organize/coordinate such visits.
Be Credible – If you are asked a question and do not know the answer, tell them you will get back with them with the answer. Follow-up with the NKF staff to get the information and send it to them in a follow-up message.
Send a Thank You Note – This is a great way to reinforce your message and cement the relationship. Include a brief summary of your visit and a description of what the legislator and/or staff member agreed to do.
Share Information - Please notify the Government Relations office (advocacy@kidney.org or (800) 889-9559) or “People Like Us” peoplelikeus@kidney.org and let us know that you have contacted your Representative or Senator (s) so that we can coordinate our efforts.

Testifying Before a Legislative Committee

Public officials want comments about a particular bill or issue. In many instances, public hearings are required by law before a regulation or statute can be approved. These hearings are sometimes convened in the capitol or the “field.”

Be Prepared - Be familiar with and read any available analysis of the legislation. Make sure remarks are written so they can be included in the official record and can distribute a copy of your testimony.
Be Brief - State your position clearly at the beginning, saying whether you support or oppose the bill. Summarize your written testimony. You may arrive and find that you have less time to speak than you planned. (In general, it takes 3 minutes to read a double-spaced page of print.)
Include Personal Stories or Anecdotes - Your personal experience is the best supporting evidence.
Practice - Do a dry run. Practice with family members and friends or even in front of a mirror. Practice not only what you will say but how you will say it. Practice making good eye contact.
Send the Committee Chair a Thank You Note - Include a copy of your testimony as well as any other pertinent background information.
Share Information – The NKF can help you prepare to testify before a Committee. Afterward, please remember to notify the Government Relations office (email address and/or 800 number) or “People Like Us” peoplelikeus@kidney.org.

Influencing the Media

Visibility for issues influences public opinion and can impact the actions of public officials. Media coverage in newspapers, on television and radio, and even on Internet sites can put pressure on public officials to act on issues. There are several ways that “People Like Us” advocates can get your point of view to the media. Tips for working with the media -

Write a Letter to the Editor – these are often some of the most watched parts of local media by legislators and other elected officials. If you decide to write a letter, be concise, timely and do not assume that readers know buzz words or jargon related to chronic kidney disease. Also, be sure to carefully follow the instructions provided by the newspaper for submitting letters to the editor.
Call in to a local radio talk show – If an issue related to chronic kidney disease, organ donation or transplantation is being discussed, explain how it effects you and your family.
Become a spokesperson – Make yourself available to the NKF for speaking to the media about your experiences with chronic kidney disease. We can help prepare you for media and public speaking opportunities.

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