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: 115th Session
HR 1270: Living Donor Protection Act of 2017 (3/1/2017)
This bill will protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long term care insurance to donors, and from charging higher premiums. Through changes to the Family and Medical Leave Act (FMLA), the bill also extends job security to living organ donors, while recovering from donation.
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
- American Association of Kidney Patient’s Policy Page
- Congressional Kidney Caucus
- Women in Government’s Kidney Disease Policy Resource Center
- Kidney Care Partners
- Wellness & Education Kidney Advocacy Network (WeKAN)
- Renal Physician’s Association
- Dialysis Patient Citizens
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.