The NBTS Advocacy Toolbox
- Why advocacy?
- What does it mean to be an advocate?
- How to be an advocate
- Telling your story
- Learn more about being an advocate
- Advocacy training opportunities
- Brain Tumor Action Week 2012
Watch Advocacy 101 to learn how easy it is to be an advocate.
Why Advocacy?
Advocacy pays off. Just last year brain tumor advocates joined with other cancer advocates to successfully urge Congress to pass a law ensuring that no patient is denied health insurance due to the fact that they have a pre-existing condition. This year advocates are working to ensure that the National Institutes of Health has sufficient funding for brain tumor research.
Public policy decisions are made every day that impact the lives of brain tumor patients, caregivers, family and friends. For example, the federal government makes decisions based on public input how much is invested in bio-medical research grants including those studying brain tumors. The federal government also makes decisions about what services Medicare will pay for and how long it will take for brain tumor treatments to be approved by the Food and Drug Administration.
Public policy decisions are directly tied to finding new therapies for brain tumors and improving the lives of brain tumor patients. Our community must be informed, involved, and indeed vocal about public policy.
Advocacy is a great way to meet others that want to fight back against brain tumors. As constituents of elected officials our voices count.
What does it mean to be an Advocate?
Advocacy is communicating to decision-makers on behalf of patients, caregivers, and all of us who have stake in eliminating brain tumors. Some advocates email elected officials from home. Many also attend meetings with legislators in-person and call them on the phone.
You can be an advocate for a few minutes or several hours at a time. In just 10 minutes you can email Congress, call both your Senators and U.S. Representative, and tell a friend about what you did and ask them to do the same. Advocacy can be done all year around. It also complements your participation in brain tumor related events including Rides, Walks, and Races.
Sign up to be an Advocate!
How to be an Advocate
There are several ways you can make your voice heard. Below is some information that will help you write, call, or visit your elected officials.
Writing to Your Elected Officials
- Be personal – Let your legislators know about the personal connection you have to the specific brain tumor public policy issue you are writing about.
- Tell them what you want them to do – Be very clear about what exactly you want an elected official to do. For example, in 2011, the National Brain Tumor Society (NBTS) is writing legislators to urge them to maintain funding for the National Institutes of Health.
- Be brief – Writing a focused, persuasive, and personal letter will be appreciated.
- Use facts and figures you know – There is a lot of information about the number of people with brain tumors at www.braintumor.org. Remember to use the data to strengthen your main point.
- Thank them when appropriate – If a legislator has demonstrated support for the issue, it is highly recommended that they be thanked for their work
- Be persuasive – In your letter, if you can, make a case for why the elected official should do what you are asking them to do.
- Save a copy of your letter – Sometimes you may get an email or paper letter back from the elected official. It can be helpful to see what you originally wrote. Also feel free to send a copy of your letter to advocacy@braintumor.org.
- To call a member of Congress at any time, you can use the number for the Capitol switchboard, 202.224.3121. The operator will ask who you are calling. Let them know which Member of Congress you wish to reach.
- State your name and be ready to prove you are a constituent by providing your home address.
- Be brief and to the point. “I’m John Smith. I am a constituent of Senator Talkingham and I am calling because I want her to support the National Institutes of Health by maintaining funding for it. Brain Tumor patients need NIH to be able to fund research working to find new therapies.”
- If you are asked a question you don’t know the answer to simply say you don’t know then get the information from NBTS and call them back. NBTS advocacy staff will assist you.
- Thank the legislator(s) when appropriate. If the legislator voted in support of your issue then say thanks.
Meeting with Elected Officials
Before the meeting
- Planning and preparation are keys to success – It is important to work with NBTS staff and other volunteers to plan out the purpose of the meeting and the strategy for educating or persuading the elected official.
- Determine a group leader for the meeting.
- Decide on roles for each person attending the meeting.
- Prepare information to use in the meeting including: information about NBTS, the policy issue, the problem for which you are advocating a solution, personal stories.
- Determine in advance what material will be left behind for the elected official to use to learn about the issue.
- Make sure you arrive at the office at least 15 minutes prior to go over your game plan with other volunteers.
During the meeting
- Be sure to properly introduce everyone in your group.
- Open about the importance of the problem for which you need the elected official’s attention.
- Provide the most important reasons you are seeking a particular policy solution and provide the data to support it.
- Most importantly – remember to ask the legislator for their support. It is ok to ask the legislator questions about their position on the issue. It is also acceptable to ask a legislator to defend their position if it differs from your views.
- Build productive relationships – The meetings are opportunities to create positive relationships for the future. The current policy issue will not be the last one you want to work on with an elected official.
- Don’t bluff.
- If you are asked for information you don’t have, just tell the elected official that you will get them the information they seek.
- Thank elected officials when appropriate.
- Do not be partisan as a volunteer of National Brain Tumor Society. Please do not make comments that are politically leaning or charged. NBTS works with elected officials in a nonpartisan manner.
Telling Your Story
Whether you are communicating in writing, via phone, or in person it is important to share your connection to the public policy issue you are advocating on. Telling your story of how you are connected to brain tumors can be an emotional experience. Do only what you feel comfortable doing.
If you feel comfortable then a few tips include:
Tell your story chronologically.
- Describe how you are alike or different from those who would benefit from the public policy you are advocating for.
- Be as brief as possible while still being complete.
- Connect your story to what you are asking the elected official to do.
How to learn more about being an Advocate
- Learning about brain tumor public policy issues
- Read and download NBTS Issue Briefs.
- Contact NBTS public policy staff for more information at advocacy@braintumor.org.
Advocacy Training Opportunities
As we plan specific events either in your community or via a webinar, we will post them as announcements and invite you to join. Keep checking back here for more details.
Brain Tumor Action Week 2012
Brain Tumor Action Week (BTAW) will be May 6-12, 2012. May is also Brain Tumor Awareness Month. BTAW will have a Capitol part and a Regional part. The Capitol part will follow the Race for Hope in Washington D.C. On May 7 and 8, advocates will have the opportunity to visit the offices of their Members of Congress and receive advocacy training on all the top brain tumor related policy issues. The Regional part will be an opportunity for advocates to come together in their community to meet with the staff of Members of Congress in their home offices and participate in key brain tumor awareness building activities.
