RARE Toolkits

Below is a list of all of our current RARE Toolkits.

BRINGING RARE DISEASE TO CAPITOL HILL: ADVOCATING FOR YOUR CAUSE
        
Background Information
Background Information

Capitol Hill may seem like an enigma to some. Shrouded in mystery, its activities may seem elusive and arcane. How does it function? How can it benefit you? Many are not aware what an incredible resource Capitol Hill can be for the rare disease community.

Laws and bills go before Congress and the Senate every day that can directly impact the rare disease community—as a result of advocates like you! From diffusing just how a bill becomes a law to understanding the intricacies of Congress, this toolkit will help integrate you into the public’s role in government.

Background Information

Know your Congress: The 113th Congress

Patient representatives, especially among the rare disease community, can frequently feel lost. But they have the capability to get involved and affect great change! Advocates bring both personal and practical feedback to government, relaying what many people dearly need.

Congress, the legislative body of the United States government, is divided into two houses: the House of Representatives and the Senate.

The House of Representatives has 433 total members who serve two year terms, representing districts across the nation. These districts are apportioned to states based on population size, and each state has at least one Representative. In the 113th Congress (the current one), there are 200 Democrats, 233 Republicans and zero Independents. 78 Representatives are women, while 355 are men.

The Senate is more stagnant, always having 100 members at any given time. Regardless of population, each state has two senators which serve six year terms. Of the 113th Congress (the current one), 53 senators are Democrats, 45 are Republicans and two are Independents. 20 senators are women; 80 are men.

How Does a Bill Become a Law?

Getting a bill passed may seem like a lofty or unattainable goal. Can the general public even partake in the process? It may be surprising for some to learn that the first step originates with you, the people! By proposing an idea or bill first, you are laying the ground work for passing a law in Congress.

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When thinking about approaching members of Congress about an issue that you would like them to address, it is very important to remember that doing so is a fundamental right and responsibility of each citizen of the United States of America. The right to petition is expressly set out in the First Amendment and it allows citizens to ask government at any level to right a wrong or correct a problem.

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Heather Long

Co-Author of HR 2671 CAL Undiagnosed Diseases Research and Collaboration Network Act

Jennifer Bernstein, Vice President, JC White Consulting
Jennifer provides an overview of the political and legislative process.

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There are several stages of debate, revision and voting before a bill can turn into a law:

1. An idea is generated in the form of a bill. Ideas can come from anywhere—lobbyists, PACs, grassroots political movements or citizens.

2. A member of Congress (either a Senator or a Representative) chooses to sponsor the bill. Insider tip: When approaching members of Congress to sponsor your bill, consider getting support from the community first. When going in with support from the community (such as signatures from patient organizations), it proves how important the issue is to the community.

3. The bill is introduced on the floor of either the House or Senate, where it is referred to an existing committee or subcommittee.  Note: Most issues relevant to the rare disease community are under jurisdiction of the House Energy and Commerce Committee or Senate, Health, Education, Labor and Pensions (HELP) Committee. Every couple of years, the members of these committees may change (with each election, a shift may occur), so make sure you are aware of these while your bill is being reviewed. Insider tip: Regardless of which committee the bill is heard or which Congressional office supports your bill, you will not get anywhere unless you cover the cost. Consider offsetting the cost before or during the bill’s passage through Congress to become a law.

4. Once the bill is in a committee, it is placed on the official calendar. The committee may defer, amend, or vote on the bill.

5. If the bill returns successfully from the committee or subcommittee, the Senate and the House will debate the bill separately, offering amendments and casting votes. If the bill is defeated in either the House or the Senate, the bill dies. It can get reintroduced though as soon as the new Congress starts.

6. Following the passage by the House or Senate, the bill is passed to the other chamber, where it follows the same route from committee to floor action. The bill may be received, rejected, ignored, or changed.

7. If the bill passes both chambers, it can then go to the President for signature. If the President approves the legislation, the bill becomes a law. The President can also veto the bill.

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Insider tip: Patience is a necessity—very rarely will anything be accomplished during one legislative cycle. It might take two or more cycles before you even gain any traction, but just stick with it.

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Jennifer Bernstein

Vice President, JC White Consulting

Stephanie Krenrich, Cystic Fibrosis Foundation
Stephanie provides an example of moving members of Congress.

This toolkit is sponsored by:

AlexionAmylinBioMarinFeinstein Kean HealthcareGenzymeGlaxoSmithKlineParabase GenomicsPfizerShireSigma Tau PharmaceuticalsSiren InteractiveViroPharmaVertex Pharmaceuticals

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