Advocacy pays off. Brain tumor advocates are working to ensure that the largest funder of brain tumor research in the country, the National Institutes of Health (NIH), has the funding it needs to support the promising research happening in labs across the US. They are also working to ensure that patients with a brain tumor have affordable access to life-saving treatments.
Public policy decisions are made every day that impact the lives of patients with a brain tumor, caregivers, family, and friends. For example, the federal government makes decisions based on public input on 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 patients with a brain tumor. Our community must be informed, involved, and 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 government officials 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.
How To Be an Advocate
There are several ways you can make your voice heard. Below are some tips to 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, National Brain Tumor Society (NBTS) advocates are writing legislators to urge them to increase 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 email@example.com.
Calling Elected Officials
- 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. Patients with a brain tumor need NIH to be able to fund research to find new therapies.”
- If you are asked a question that you don’t know the answer to, simply say you don’t know. 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.
Learn about the basics of advocacy and what it is in this training video.