The National Organization for Rare Disorders, Inc. Congressional Guide Introduction The Legislative Process The Role of Individual Members of Congress The Importance of Staff Contacts Glossary of Congressional Terms _________________________________________________________________ HOW CONGRESS WORKS: A GUIDE FOR RARE DISORDER ADVOCATES Prepared by Michael S. Langan, Vice President of Public Policy The National Organization for Rare Disorders, Inc. (NORD) _________________________________________________________________ INTRODUCTION Our representative system of government places a special responsibility on each of us to make ourselves heard in Washington. In fact, no more important source of information is available to members of Congress than the people who live and work in their State or district. As a constituent, you represent more than an abstract theme or a statistic. You offer personal experiences that make you uniquely qualified to talk about the issues that matter most to you--issues such as health care reform, medicaid, rare disease research, and orphan drug development. The more effectively you communicate with your elected officials, the more effective the representative system of government becomes. But to be effective requires more than a willingness to get involved. It requires a good understanding of how the policy-making process works and who the key players are. But most importantly, it requires that you know when your contact with lawmakers can have the greatest impact on the decision-making process. Because no matter how compelling your message is, it will count for little if decisions have already been made. This guide will outline a common-sense approach to understanding the legislative decision-making process. While I'll offer some general tips on getting your point across to members of Congress, my primary goal is to give you - the rare disease advocate - basic information about the legislative process, how it works, and when you can have the greatest impact on the decisions that affect the lives of children and adults with orphan diseases. _________________________________________________________________ THE LEGISLATIVE PROCESS To the average person, the process of getting a bill through Congress appears highly complex and technical. Actually, the process itself is fairly simple. What can be confusing to the lay person is (1) the volume of legislation pending before Congress and (2) the system Congress has for distributing its work. It is true that a great deal of legislation is handled by Congress each year. But only a handful of bills are of particular interest to the orphan disease community. So long as you keep your sights on the legislation dealing only with orphan disease-related issues, you should have no trouble following the progress of those bills. And once you familiarize yourself with the key committees responsible for handling rare disease-related issues, following the progress of legislation will become much easier. The key to deciphering the legislative process is in understanding that legislation is grouped into three main categories. Authorizing legislation is a bill that creates a new federal program or extends the life of an existing program. Authorizing bills usually set a ceiling on the maximum amount of funds that can be spent by a program for a period of 3 to 5 years. An authorizing bill only establishes a framework for a federal program--it does not provide funds to operate the program. This year, Congress is scheduled to review at least 3 orphan disease-related authorizing laws: the National Institutes of Health authorization that funds medical research; the law authorizing the Orphan Drug Tax Credit; and a number of amendments to the Food, Drug and Cosmetic Act, under the name of "FDA reform". An appropriations bill allocates funding for specific federal programs. Unlike authorizing legislation which remains in effect for 3 or more years, an appropriations bill must be enacted into law every year. A good example is the health appropriations bill that provides funding for research into rare disorders. The third type of bill is entitlement legislation. This is a measure that guarantees a certain level of benefits to persons who meet eligibility requirements set by law. The Medicare and Medicaid programs are examples of existing entitlement programs. An example of entitlement legislation that the National Organization for Rare Disorders (NORD) is currently tracking is the effort in Congress to shift primary responsibility for Medicaid to the states. _________________________________________________________________ LAYING THE GROUNDWORK: THE ROLE OF INDIVIDUAL MEMBERS OF CONGRESS Generally speaking, the earlier you get involved, the better your chances of having an impact on decision-making. The further along a bill advances in the legislative process, the more difficult it becomes to change or modify. This is especially true now that Congress often groups several issues into one bill. The first formal step in the legislative process occurs when a bill is introduced by one or more members of Congress. But from an advocate's perspective, the work begins much earlier than that. For example, once NORD has identified an issue or a problem that merits special attention--like the need for coordination of rare disease research--our Washington office will select one or two members of Congress whose philosophy and voting record indicate that they would be willing to play a leadership role in supporting the issue. After extensive discussions with the senator or representative and their staff, formal legislation is prepared for introduction. Bills introduced in the House are assigned an "H.R." number (e.g. H.R.2027) and bills introduced in the Senate are given an "S." number. Of course, having legislation introduced and getting it enacted into law are two different things. In order to prevent a bill from languishing in someone's files requires that we demonstrate broad support for the issue. In order to do that, NORD member organizations, and individual members, must contact their own senators and representatives and ask them to co-sponsor the bill. The way that is done is by having the lawmaker's staff contact the original sponsor and ask to have his or her name listed as supporting the bill. THE IMPORTANCE OF THE COMMITTEE SYSTEM Congressional committees are the "workhorses" of Congress. As the number of issues brought before Congress grows, lawmakers increasingly rely on the committee system to sift through the facts and determine how issues should be resolved. Currently, there are 17 standing committees in the Senate and 19 in the House of Representatives. Both chambers also maintain certain select committees. Generally, standing committees have the power to generate legislation in their particular areas of jurisdiction, like tax-writing or appropriations. Select committees, like the Senate Special Committee on Aging, are primarily advisory in nature. Most committees have delegated specific issues under their jurisdiction to subcommittees, whose job it is to analyze each issue and eventually make a recommendation to their parent committee, or full committee as it is sometimes called. Here again, it is vitally important that contact be made with the subcommittees as early in the process as possible. In their earliest stages of review, subcommittees welcome input from interested organizations and individuals. At this point, letters and personal visits with members of the subcommittee and their staff can have a tremendous affect on the panel's recommendations. In many instances, a subcommittee will hold public hearings, either in Washington, D.C. or some other region of the country, where NORD member organizations may ask to present their positions. If your senator or representative is not on the subcommittee, does that mean you have no influence over the outcome? It is true that members of a subcommittee are regarded as "specialists" by their colleagues and therefore can wield considerable power in deciding whether or not a bill will be advanced through the legislative process. However, your own senators or representatives, whether or not they are on the subcommittee, can often be effective intermediaries, depending on their personal or political relationships with the subcommittee members. FLOOR ACTION Once legislation has been approved by a committee, it becomes eligible for debate on the House and Senate floors, where it may be passed, defeated, or amended significantly. When orphan disease-related legislation is about to be debated, NORD notifies member organizations of the need for communications with senators or representatives. Since floor debates are often scheduled on short notice, patient advocates are encouraged to prepare their messages (e.g. letters, telephone calls etc.) well in advance. However, keep in mind that timing is extremely critical. Any communications about legislation that is coming up for floor debate should arrive as close to the time of voting as possible. CONFERENCE ACTION If the House and Senate pass different versions of the same bill, a handful of members from each chamber will be named to a conference committee where they will attempt to work out a compromise. Representation on the conference committee will usually consist of selected members of the House and Senate subcommittees that originally developed the legislation. In some instances, conference committees may only need to resolve a few issues. In the case of appropriations bills (especially the ones that contain Cystinosis research and family support programs), there may be more than one hundred different items to be resolved. Orphan disease patient advocates whose senators or representatives happen to be on a conference committee can play a crucial role in the deliberations. Usually, NORD will contact selected member organizations and ask them to target their communications on members of the conference committee. But here again, the timing of your communications is very important because most conference committees meet for only one or two days. The end product of the meetings is a conference report containing the compromise bill and usually a section-by-section explanation of the compromise that was agreed on. Once the conference report is agreed to by both the House and Senate, the measure is sent to the President for approval (or veto). _________________________________________________________________ THE IMPORTANCE OF STAFF CONTACTS Lastly, while senators and representatives are the ultimate decision-makers, it is important to recognize that staff can have significant influence over the course and content of legislation. Rare disease advocates are urged to maintain ongoing contacts with these individuals, especially subcommittee staff and the lawmakers' own legislative aides. When the time comes to contact a lawmaker about specific orphan disease-related legislation, your staff contact should also be notified. This is one way of insuring that our issues are not lost or overlooked among the stack of legislation that is discussed every day. Also, keep in mind that every senator and representative maintains an office(s) in his or her home state. These district offices offer an excellent opportunity to build relationships with key staff, channel the latest rare disorder-related information back to senators and representatives, and generally get your message across to the legislator. _________________________________________________________________ GLOSSARY OF CONGRESSIONAL TERMS The following is a listing of terms commonly used in connection with the legislative process. Act - The term for legislation that has been passed by Congress and signed into law by the President. Amendment - The proposal of a member of Congress to alter the wording of a bill being considered by a subcommittee, committee, or on the House or Senate floor. Amendments can also be offered to add or delete entire sections of a bill. Appropriation - Legislation that directs the spending of funds from the federal treasury for a specific purpose, e.g. funding for rare disorder research. By custom, an appropriations bill originates in the House, where it is assigned an H.R. number (e.g. H.R.2027) until it becomes law or is vetoed by the President. Typically, each appropriations bill includes funding for several hundred federal programs. Authorization - A law creating a new federal program or extending the life of an existing program. An authorization establishes the framework for operating a federal program, and usually sets the maximum amount of funds that can be given to a program for a period of 3 to 5 years. Under the rules of Congress, an authorization must be enacted into law before appropriations can be made to the program. Bill - A proposed law introduced by a member(s) of Congress. Budget - The document the President sends to Congress each year outlining federal expenditures and revenues for the upcoming fiscal year. The President's budget is usually submitted to Congress in late January or early February. Budget Resolution - Legislation passed by Congress each year which sets overall limits on spending and revenues. Congressional committees use the budget resolution as a guide for allocating funds to specific federal programs. The budget resolution does not require the President's approval. Conference - A meeting between House and Senate members to reconcile differences between bills passed by their respective chambers of Congress. Once a compromise has been ironed out a conference report is issued and voted on by the full House and Senate. The measure is then sent to the President for approval. Continuing Resolution - An emergency appropriations bill providing funding for federal agencies whose regular appropriations bills have not been passed before the end of the fiscal year. Entitlement - A federal program that guarantees a certain level of benefits to persons who meet requirements set by law, such as Social Security and unemployment benefits. Congress and the President generally have very little discretion over spending by these programs. Fiscal Year - For the federal government, the fiscal year runs from October 1 through September 30. Hearings - Committee meetings where testimony is taken from witnesses representing government agencies, private sector organizations, and the general public. Most congressional hearings are open to the public. Hearings may be held in Washington, D.C. or in local communities. Mark-Up - A subcommittee or committee meeting for the purpose of writing legislation. Once completed, the measure is ready for debate on the floor of the House or Senate. Public Law - A bill after it has been passed by the House and Senate and subsequently approved by the President. Reconciliation bill - Legislation that contains changes (usually spending cuts) to existing laws so as to conform--or reconcile--with policies adopted in the budget resolution. Rescission - The act of canceling appropriations already enacted into law. Standing Committee - A committee that is permanently established by House and Senate rules. Standing committees are empowered to prepare and review legislation. (As opposed to select committees, which serve only to advise Congress on a limited range of issues.) Veto - The President's formal disapproval of legislation passed by Congress. When Congress is in session, the President must veto a bill within 10 days after receiving it from Congress, otherwise it becomes law without his approval. A bill can become law after a Presidential veto if two-thirds of Congress vote to override the veto