Health Policy and Patient Advocacy

In the fight for health awareness and disease prevention, it is important and empowering for patients to get involved in political decisions that may affect them and the future of their disease. Kidney patients know, like no other person can, the challenges and triumphs of living with kidney disease. Your local, state, and national representatives are accountable to you and are available to listen to your thoughts, ideas, and concerns. The following are the national bills affecting kidney disease, and some ways to make your voice heard and help support kidney disease prevention, early detection, and research.

National Bills Affecting Nephrology: 114th Session

S 3090/HR 5942: The Dialysis Patient Access to Integrated-care, Empowerment, Nephrologists, Treatment, and Services Demonstration Act of 2016 (6/23/2016)

This bill, also known as the PATIENTS Act, would establish a care coordination model that ESRD patients and providers could enroll in. The program would 1) expand access to improved care coordination for enrolled patients; 2) give enrolled patients supplemental benefits beyond what is available under current Medicare plans; 3) offer more flexible partnership options for nephrologists; and 4) establish incentives for providers, physicians, and patients to enroll.

Status: In Committee

HR 34: 21st Century Cures Bill (1/6/2015)

This bill includes a provision that would allow end-stage renal disease (ESRD) patients to choose Medicare Advantage plans. Medicare Advantage plans include extra benefits not included in original Medicare, and may help with co-payments and cost sharing. Currently, in most states, ESRD patients do not have the option of purchasing these plans. This bill also allocates funding to the National Institutes of Health to continue research into a variety of medical conditions, including kidney disease.

Status: Passed House and Senate, on its way to the President.

HR 1130/S 598: The Chronic Kidney Disease Improvement in Research and Treatment Act (2/27/2015) 

This bill has three primary goals: 1) Improving understanding of chronic kidney disease through expanded research and coordination, 2) promoting access to chronic kidney disease treatments, 3) creating economic stability for providers caring for individuals with chronic kidney disease. 

Status: In Committee

S 1435: Organ Donation and Promotion Act of 2015 (5/21/2015)

This bill would allocate $20 million per year to boost research into organ donation science and grant funds to states to help them carry out organ donor awareness, public education, and outreach activities and programs designed to increase the number of organ donors within the State, including living donors.

Status: In Committee 

HR 2472: Everson Walls and Ron Springs Gift for Life Act of 2015 (5/20/2015)

This bill would create a national organ and tissue donor registry to facilitate exchanges of donor information between state organ registries, provide assistance to states to develop, enhance, expand, and evaluate State organ and tissue donor registries, and complete a study to determine the feasibility of establishing a living donor database for the purpose of tracking the short- and long-term health effects of organ donation on living organ donors.

Everson Walls and Ron Springs are retired professional football players; Everson Walls donated a kidney to Ron Springs in 2007.

Status: In Committee

Strategies for Advocacy

  • Write a letter to the editor of your local paper. (See tips below)
  • Raise awareness of kidney disease by speaking at your church or at a town hall meeting.
  • Schedule a visit to meet with your local elected leaders; bring a group of friends, family members, or patients to talk about their experiences with kidney disease. (See tips below)
  • Contact your representatives:

Meet or Write Your Legislator 

What is a Legislator?

Legislator means "law maker." Legislators are elected officials who write bills, vote on laws, and help decide what programs receive money, among other things. Legislators are voted into office by the people that live in their district.

Face-to-face meetings where you present your case to your legislator can be very powerful. Elected officials are usually affected by the opinions of constituents who are dedicated enough to a particular issue to arrange a visit. The visits give the legislator an opportunity to ask questions, and to connect an abstract issue with a human face. If you establish good rapport, give the legislator useful information, and act ethically, you may have easier access and clout the next time an important bill comes up. 

When you can, try to set appointments with the legislators themselves; failing this see their legislative assistants. At state, city, and county levels, seeing the legislator himself/herself is usually not difficult at all. As a private citizen, however, you may be granted a longer meeting and better scheduling if you are a constituent of that particular legislator.

Tips for meeting with your legislator

  • Be honest (even about your position's weak points)
  • Be prepared. Your representatives, although they work for you, can sometimes be intimidating. The more prepared you are, the less nervous you will be! You may even want to do a practice run.
  • Give a clear statement of your position and why you feel that your position is best.
  • Explain why this issue will impact your legislator and/or the people that live in that legislator's district (the constituents)
  • The more people who visit a legislator on a particular issue, the larger the impact of the visits will be.

Tips for writing a letter to your legislator

  • This Issue Framing Worksheet may help you gather your thoughts about the topic or bill important to you.
  • It helps to include your address when you write your legislator so they can tell that you live in their district and vote for them.
  • Be concise. Try not to write more than 2 pages, but if you need more space to tell your story, keep writing!
  • Encourage friends and families affected by kidney disease to write similar letters to their own legislators.

Write a Letter to the Editor

Letters to the editor are one way to get your voice heard in the media. They present your perspective in a local newspaper and can be used to offer a counter argument to articles you disagree with. They will reach a large audience and create an impression of widespread support for or against an issue. Letters to the editor are also important because they are monitored by elected officials and other decision-makers. This can be your opportunity to show your legislator what his or her constituents think about an issue.

Letters to the editor are free and can be submitted by many people. The more volunteers you have submitting letters on an issue, the more likely it is that one of the letters will get printed.

Find your local newspaper here.

When writing letters to the editor:

  • Be direct. Make one point (or two at most) in your letter. Letters are often edited; state the point clearly in the first paragraph.
  • Be short and concise. One hundred fifty to 200 words, or less than one typed, double-spaced page. Check with your local paper for their limits.
  • Write no more than three or four short paragraphs. In the first paragraph, mention any previous coverage of a story that you are responding to. The second paragraph introduces something personal and states your side of the argument: "As someone who has kidney disease."
  • Be timely. Address a specific article, editorial, or letter that recently appeared in the paper you are writing to or a recent event. Refer to the title, date, and author of the piece you are agreeing with or disputing.
  • Support your facts. If the topic you address is controversial, consider sending documentation along with your letter, but don't overload the editors with too much information. Refute or support specific statements, address relevant facts that are ignored, and avoid attacking the reporter or the newspaper.
  • Local Angle. To explain the issue's local or personal impact, look at the letters that appear in your paper, is a certain type of letter usually printed?
  • Know Your Audience. Familiarize yourself with the coverage and editorial position of the paper. Be professional-- this is not a letter to a friend. Write for the community who reads the paper (do not try to discuss technical terms if the audience will not know the technicalities of the issue).
  • Maximize your letter. Send your letter to neighborhood, alternative, high school and college papers-- the smaller the publication the more likely it will get published.
  • Encourage others to write. If your letter does not get published, perhaps someone else's letter on the same topic will. Stagger mailings a few days apart for a current topic or weeks apart to spur general interest.
  • Submit the letter via postal mail, fax, or email, depending on your local media's preference
Adapted from: Bray, Robert. Spin Works!: A Media Guidebook for Communicating Values and Shaping Opinion, 2000.

Fact Sheets

Policy/Advocacy Links

Interested in becoming a patient advocate? Join the Renal Support Network’s WeKan Group, a network of patient activists from across the country whose common goal is to ensure that people with CKD receive quality care through the Renal Support Network.