Advocacy Toolkit

GBS-CIDP Advocacy on Capital Hill
Advocacy Manager Chelsey Fix (left) on Capitol Hill with a fellow healthcare advocate.

Advocacy Tools & Resources

If you are passionate about our community and want to share your story with lawmakers, you are on the way to becoming an advocate! To help you get started, we’ve pulled together some “need-to-know” information to guide your advocacy efforts.

Who’s who in Congress?

Senator

Each state has 2 Senators. The Senate is one chamber of Congress, and Senators vote on bills in the Senate.

Representative/Congressperson

Each state has a different number of Representatives, and this is determined by the population size of your state. The federal courts draw districts within each state, and then each district elects a Congressperson. Representatives vote on bills in the House of Representatives, a chamber of Congress.

Congress

The legislative branch of the government – they write the laws. The two chambers of Congress are the House and the Senate.

Speaker of the House

The leader of the House of Representatives.

Vice President

The leader of the Senate

Key Committees in Congress

House Committee on Ways and Means

This committee is responsible for reviewing and making recommendations to bills that are related to revenue-raising measures. Bills related to Medicare, unemployment, Social Security, and other similar programs fall under this Committee’s review. There is a Subcommittee on Health within this committee.

House Committee on Appropriations

This committee is responsible for reviewing and making recommendations to bills that are related to government spending. Bills related to agriculture, Health and Human Services, Defense, and other similar programs fall under this Committee’s review.

Senate Defense Appropriations Subcommittee

This Subcommittee within the Appropriations Committee (Senate) is responsible for reviewing and making recommendations to bills related to spending within the Department of Defense (DOD).

This is important for the foundation because Guillain-Barre Syndrome is a condition eligible for study through the DOD Peer Reviewed Medical Research Program, and needs to be added to the list of eligible conditions every year.

Rare Disease Caucus

A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Caucuses are formed in the House of Representatives and can hold briefings to raise awareness on issues. While no bills can be introduced or created through a caucus, the caucus may choose to vote similarly on issues related to Rare Diseases

Who’s who in State Government?

Governor

The state’s chief executive. The governor is the person that signs state bills into laws.

Lieutenant governor

The governor’s second in command

State Secretary of State (Or Secretary of the Commonwealth)

Each state may assign different duties to this position, but this person is generally tasked with keeping important state records. This position is elected by citizens of the state.

Referendum

A way for citizens to approve state bills or constitutional changes by voting directly on the issue.

Rare Disease Caucus

Pennsylvania and California have a Rare Disease Caucus in their state governments. These caucuses help to raise awareness at the state government level and advocate for beneficial rare disease legislation.

State Health Department

Each state defines slightly different responsibilities for their health department, but each state health department is generally in charge of vaccinations, preventative health measures, licensing of health care professionals, and communicating with the appropriate federal agencies for health purposes.

How Does a Bill Become a Law

  1. Someone has an idea for a law (or an amendment/change to an existing law). This idea can come from a legislator, a member of their staff, or a citizen! Through advocacy activities, we can bring our ideas to legislators. The idea then gets written down into a bill.
  2. A member of Congress introduces a bill during a session of the House of Representatives or the Senate
    • *Fun fact – bills that deal with money must be introduced in the House of Representatives first
  3. The bill is then assigned a number and referred to the appropriate Committee
  4. The Committee reviews the bill and may edit, or “mark up”, the bill.  The Committee can then table the bill, bring it back to the House or Senate floor, or refer it to a Subcommittee for intense studying.
    • If a bill goes to a subcommittee, the subcommittee intensely studies the bill and may suggest more changes. Subcommittees may hold hearings to learn the views of experts, supporters, or community members.
  5. Once the bill has completed the editing process, it gets approved by the Committee and returns to the House or Senate, where it is re-introduced, read to the members of Congress, and debated.
  6. Finally, the bill is voted on by members of Congress. If passed, the process is repeated for the opposite chamber of Congress (i.e., if the Bill started in the House and gets approved there, it then moves to the Senate).
  7. Once both houses of Congress approve the bill, the bill goes before the President who reviews the bill and decides to sign it into law or veto the bill.
    • Vetoes may be overridden if 2/3 members of the House and Senate vote to overturn the veto.
    • If a veto is overridden, the bill becomes law

Meeting, Calling or Writing To Members of Congress

My feet may stumble but never my words

General rules!

  • Meeting in-person? Dress in business attire, and remember that you may only have 10-15 minutes to tell your story and make your ask.
  • Calling? Make sure there is no background noise, and write down what you plan to say ahead of time. Make sure you use our legislative agenda!
  • Writing? Type your letter or use our Action Center

What to tell your Congressperson / Senator

  • Your name
  • That you are a constituent in their state or district
  • Your story (link to How to Share Your Story)
  • Your ask
    • Review our Legislative Agenda (link to leg agenda page) to figure out what you want to ask during your visit / call / letter
  • A sincere ‘thank you’
    • You should always thank the Congressperson or Senator (or their staff member)for their time, even if you are writing a letter or making a call.

Dos and Don’ts

  • Do feel confident and professional.
  • Don’t argue! If the staff member (or Senator or Congressperson) doesn’t agree with your asks, spend time sharing your story and educating them on what it is like to live with a rare disease.
  • Do use printed materials to help guide your meeting – visual aids may be helpful for you and the person you are meeting with.
  • Don’t make up facts! If you don’t know the answer to a question, let the person know that you will follow up with them.
  • Do be efficient – meetings will likely only be 15-20 minutes, phone calls may be shorter, and your letter needs to be read quickly! Make sure you get to the point quickly, no matter how you are communicating.

How to Share Your Story

Sharing your story can be intimidating, and it is important to make sure that you don’t forget any key details! Take time to write our your story, save it, and practice telling it. Use this guide to help you get started, or email Chelsey at Chelsey.Fix@GBS-CIDP.org for some assistance. Remember, your story needs to be concise and impactful- meetings are often 15 minutes or less!

  • Sentence 1: I was diagnosed with __________ in ___(year)___   at the age of ____, a time of my life when I was _____________.
  • Sentence 2: Share a detail about the diagnosis process.
  • Sentence 3: Share a detail about the treatment you received and whether you still receive treatment or experience side-effects.
  • Sentence 4: Share how your life is impacted now as a result of your diagnosis.
  • Sentence 5: My story is unique, but there are thousands of other people with similar stories and struggles, so I hope that you will work with me and the GBS|CIDP Foundation International to make policy changes that will help others impacted with this or a similar disease.

Take Action Now! Visit our Action Center to write to your Senators and Representative.

 


 

Downloadable Resources 

Toolkit-To-Go 

Click here to download the essential advocacy information to take with you!

State Specific Fact Sheet

Click on your state below to download a fact sheet that includes information about GBS and CIDP in your area!

Alabama

Alaska

Arizona

Arkansas

California

Colorado

Connecticut

Delaware

Florida

Georgia

Hawaii

Idaho

Illinois

Indiana

Iowa

Kansas

Kentucky

Louisiana

Maine

Maryland

Massachusetts

Michigan

Minnesota

Mississippi

Missouri

Montana

Nebraska

Nevada

New Hampshire

New Jersey 

New Mexico 

New York 

North Carolina

North Dakota

Ohio

Oklahoma

Oregon

Pennsylvania

Rhode Island

South Carolina

South Dakota

Tennessee

Texas

Utah

Vermont

Virginia

Washington

West Virginia

Wisconsin 

Wyoming