Pulmonary Hypertension Association home
Pulmonary Hypertension Association
 contact us | join PHA | site map/search

Learn to Lobby: The PH Community's Guide to Successful Advocacy

Overview

The United States Congress The House of Representatives
  • The House of Representatives is the lower chamber of Congress.
  • Its main distinction from the Senate is that it has sole responsibility for originating appropriations bills - legislation that allocates government money.
  • Representatives can also be called congressmen or congresswomen, depending on their gender.
  • Representatives are selected every two years by their constituents - the people who live in a certain geographical area called a district.
  • Congressional districts are redrawn every ten years.
  • Each district has a state and a number and is named using these terms.
    • For example, if a district is number 10 in California, it is called the 'tenth district of California.'
  • Sometimes representatives include the name of their district in their title.
    • For example, Representative Brady of the eighth district of Texas may write his name 'Representative Brady (TX-8).'
  • There are 435 congressional districts and one representative is elected in each district so there are 435 representatives in the United States Congress.
  • One Representative is selected to serve as the Speaker of the House.
    • This person is chosen from the political party that has the most Members in the House. This is called the majority party.
    • The Speaker has the power to control the proceedings of the House.
The Senate
  • The Senate is the upper chamber of Congress.
  • The Senate is very similar to the House of Representatives. However, the Senate has the special responsibility to approve presidential nominees for the Supreme Court, Cabinet positions, and other key federal officials.
  • Senators are elected every six years by the people of each state.
    • These people are their constituents whom they represent in the Senate.
  • There are 50 states and two senators are elected in each state so there are 100 senators.
  • The Senate
  • Each political party selects a leader for the Senate.
    • The senator from the majority party is called the Senate Majority Leader. This person has the power to schedule legislative priorities for the Senate.
    • The senator from the minority party is called the Senate Minority Leader.
Key Points
  • There are 435 representatives and 100 senators.
  • Every American has one representative and two senators.
  • Americans elect their representative and senators to represent their interests.
Committees
  • Both the Members of the House and Senate are divided up into smaller groups called committees.
  • Each committee is responsible for discussing a certain set of issues. Committees are usually named for the type of issue they discuss.
  • For example, the Senate committee that discusses health issues is called the Health, Education, Labor and Pensions Committee.
  • Most committees are divided into even smaller groups called subcommittees.
  • Each subcommittee is given a topic covered in the committee.
  • For example, the Health, Education, Labor, and Pensions Committee has a subcommittee called the Subcommittee on Aging which discusses health, education, labor, and pensions issues relating to older Americans.
  • Each committee and subcommittee has one Member of Congress from each political party who are responsible for scheduling discussion in the committee.
    • The Chair is the Member from the majority party.
    • The Ranking Member is the Member from the minority party.
Congressional Offices
  • Each Member of Congress has an office on Capitol Hill in Washington, D.C. and at least one in his/her home district or state.
  • Members of Congress count on the aid of several key people in their offices called staffers.
  • Each staffer has a distinct role in helping the Member of Congress.
    • Some staffers specialize in helping constituents with requests.
    • Others strategize about how to promote legislation.
Each office has a:
  • Chief of Staff who oversees all staffers and works closely with the Member of Congress to plan.
  • Legislative Director who organizes the Member of Congress' legislative priorities.
  • Press Secretary or Communications Director who handles press requests and represents the Member of Congress to the media.
Each office also has several Legislative Assistants who advise the Member of Congress on a set of issues.
  • Legislative Assistants are named for the specific topics they focus on.
    • For example, a Legislative Assistant who deals with health issues is called a 'Health LA.'
    • The letters 'LA' stand for Legislative Assistant.
  • Congress is inactive several times a year. This time is called recess.
  • During a recess Members of Congress often work from one of their district offices in their home states.
  • This is a good opportunity to meet with your Member of Congress.
Key Points
  • Members of Congress are divided into committees to discuss particular issues.
  • Committees are divided into subcommittees to deliberate on specific topics.
  • Members of Congress work out of offices on Capitol Hill and in their home districts.
  • Staffers work with Members of Congress to advise them on particular issue areas.
Legislative Process

Laws are made through a structured process
  • The process begins when a Member of Congress decides that a law is needed on a certain issue.
  • The Member of Congress has his/her ideas written into a document called a bill.
Sponsors & Co-sponsors
  • The Member who originates the bill is called the bill's sponsor.
  • The bill's sponsor may seek support for the bill from other Members of Congress.
  • If other representatives decide to support a House bill or if other senators decide to support a Senate bill, they may choose to co-sponsor it.
  • This means that they sign onto the bill and make their support public.
  • Co-sponsors can choose to support a bill for many reasons.
    • Sometimes another Member of Congress has asked them to sign on.
    • Other times, their constituents have requested that they support the bill.
    • Members of Congress can also decide to support a bill based on their own agendas.
  • The more co-sponsors a bill has, the more likely it is to be successful.
Introduction to Congress
  • The bill's sponsor submits the bill to the chamber of Congress of which he/she is a Member.
  • The bill is given a number.
    • House bills are numbered with the prefix 'H.R.'
    • Senate bills are numbered with the prefix 'S.'
Committees and Subcommittees
  • The leadership in the House or Senate may then direct the bill to the committee or committees which discuss the issues that the bill addresses.
  • The committee may consider the bill or send it to subcommittee for discussion first.
  • Members of the committee or subcommittee may choose to hold a hearing on a bill.
  • During the hearing, experts submit testimony in favor of or in opposition of the bill.
  • Members may also select to 'mark-up' the bill. This process involves discussion of potential changes to the bill.
  • Finally, the bill may be reported. Members of the committee submit a report to the Floor (or entirety) of the House or Senate with their recommendation for action.
  • If no action is taken in committee, the bill will not progress to a Floor vote and is considered 'dead in committee.'
On the Floor
  • The bill will be added to the calendar for further review.
  • If the leadership in the House or Senate allows the bill to come to the Floor for discussion, Members can:
    • debate about the bill
    • approve or reject proposed changes from committee
    • approve or reject new changes that come up during this time
  • Any changes to the bill are written separately and called amendments.
    • Amendments to a bill must be approved with the majority of Members voting in favor of successful amendments.
  • If no action is taken on the Floor to consider the bill, the bill cannot come to a vote and will not succeed.
  • After amendments are considered, the bill may be considered for a vote. A majority of Members must vote in favor of the bill for it to succeed.
  • If the House or Senate approves the bill it is sent to the other chamber for similar consideration.
    • The bill will follow the same process from introduction through committee and to vote.
    • Members can continue to add amendments to the bill during this time.
  • If the bill is passed with additional amendments, it is sent to a group of representatives and senators to iron out the differences between the two versions of the bill.
    • This group is called a conference committee.
    • After the conference committee process, the bill can go to the President for consideration.
  • If the bill is passed without additional amendments, it is sent directly to the President for consideration.
The President reviews the bill. He can do several things.
  • If he approves of the bill:
    • He might chose to sign it into law.
    • He may also choose not to sign it, and if Congress is in session, the bill will become law after 10 days.
  • If he disapproves of the bill:
    • He might chose to veto the bill. The bill will be sent back to either the House or the Senate, depending on where it originated. Congress will then have a chance to override the veto.
    • If there are less than 10 days left before Congress adjourns and the president chooses not to sign the bill, the bill will not become law. Congress will not be able to override this. This is called a 'pocket veto'.
  • If the president vetoes the bill, it is sent back to Congress for another vote.
    • If at least two-thirds of the Members of the originating chamber vote in favor of the bill, it is sent to the other chamber of Congress.
      • If less than two-thirds of those Members vote for the bill, it will not progress further.
    • In the next chamber, if two-thirds of the Members vote for the bill, the President's veto will be overridden and the bill will become law.
      • If the two-thirds vote is not achieved, the bill will die.
Key Points
  • A bill is introduced by a sponsor.
  • Other Members of congress may co-sponsor a bill.
  • Each bill must go through a lengthy process before Congress can vote on it.
  • Every bill must be approved by the President or 2/3 of both Houses of Congress to become law.
The PH Research Act

What is the PH Research Act?

  • The PH Research Act is a bill which supports the PH community.
  • It was first introduced in 2000 by Rep. Brady (TX-8).
  • It has not been successful in getting out of committee for the past three tries.
  • Rep. Lantos (CA-12), Rep. Blunt (MO-7), and Rep. Hoyer (MD-5) have joined Rep. Brady (TX-8) in re-introducing this legislation in the House of Representatives.
  • Sen. Cornyn (TX-R) has introduced this bill in the Senate.
What does the PH Research Act do?
  • It increases funding for PH Research.
    • This leads to further understanding of PH and new treatments for the illness.
    • Currently there are five FDA-approved treatments for PH and five more in trials.
    • The PH gene has been identified by researchers.
    • Medical researchers are on the brink of developing cutting edge treatments that may lead to a cure. This important work must not be hindered by lack of funding.
  • It increases public awareness of PH.
    • This aids insurance companies and others to learn about PH symptoms, effective treatments, and the resources necessary to empower communities to fight PH.
    • Most Americans have never heard of PH and do not know that symptoms such as shortness of breath, fatigue, chest pain, and dizziness are common indicators of the illness. Without that knowledge, they accept improper diagnosis and lose precious time in treating PH.
  • It increases medical professionals' knowledge of PH.
    • This helps to decrease the number of undiagnosed patients and increase the quality of treatment for those who have been diagnosed with PH.
    • Early diagnosis remains the best defense against PH. Quality of life and effectiveness of treatment are maximized when diagnosis is early in the onset of illness.
    • PH patients report an average of three physician consultations before a fourth doctor makes a correct diagnosis. This process can take years, and patient health often declines sharply over this important time.
  • It moves us one step closer to a cure!
How can you help to make the PH Research Act successful?
  • Contact Congress!
Key Points
  • The PH Research Act is legislation that will be considered in Congress this year.
  • The PH Research Act benefits the PH community in several ways.
  • The PH community can promote the bill by asking their Members of Congress for support.
Contacting Congress: A Step-by-Step Guide
There are several ways you can contact your Member of Congress: Step-by-Step Guide: Calling or Writing
  1. Make a list of your elected officials
    • PHA has a helpful online tool that can help you find the information you will need. You can access it at www.phassociation.org/Take_Action.
    • Enter your zip code in the appropriate box and click "Go".
    • The following page will give you the names of your representative and senators.
    • Click on each of these names to get their contact information and include it in your list.
       
  2. Find the name of each elected official's Health Legislative Assistant (LA)
    • The Health LA is the staffer in charge of researching and recommending health policies for the elected official.
    • You can find the name of the Health LA by using the same online tool. Go through the same steps above to pull up each elected official's information.
    • There is an option under each elected official's photograph that is called "staff". Click on that and you will see the names of several staffers including the Health LA.
    • Make a note of the relevant information.
       
  3. Tailor your message
    • When calling your elected official's office, it is appropriate to ask to speak with the Health LA.
    • When writing to your elected official, it is better to address your correspondence to the elected official directly.
    • Your message should consist of three key points:
      1. Introduce yourself as a member of the PH community and a constituent of the elected official.
      2. Give a brief presentation of PH and highlight your experience with PH.
      3. Request they take action on a specific issue.
         
  4. Call or send your message
    • When calling, do not be discouraged if you are not able to get a hold of the Health LA on the first try. Leave him/her a message and call back to follow up in a week.
    • When sending a letter, please keep in mind that mail takes a long while to process for Capitol Hill offices. You may not receive a response quickly and calling can yield faster results.
       
  5. Tell PHA
    • Send a copy of the government evaluation form found at www.phassociation.org/advocacy/evalform.asp to PHA.
    • Upon receipt, PHA will send you a certificate of recognition and offer the opportunity to connect with other active members of the PH community.
Step-by-Step Guide: E-mailing
  • Members of Congress use webforms instead of traditional e-mail in order to prevent spam.
     
  • PHA's website has a feature which will allow you to e-mail your Members of Congress using webforms.
  1. Make a list of your elected officials
    • PHA has a helpful online tool that can help you find the information you will need. You can access it at www.phassociation.org/Take_Action.
    • Enter your zip code in the appropriate box and click "Go".
    • The following page will give you the names of your representative and senators.
       
  2. Access the e-mail feature
    • Click the option titled 'e-mail' under each of your Members of Congress.
       
  3. Tailor and send your message. Your message should consist of three key points:
    • Introduce yourself as a member of the PH community and a constituent of the elected official.
    • Give a brief presentation of PH and highlight your experience with PH.
    • Request they take action on a specific issue.
       
  4. Tell PHA
    • Send a copy of the government evaluation form found at www.phassociation.org/advocacy/evalform.asp to PHA.
    • Upon receipt, PHA will send you a certificate of recognition and offer the opportunity to connect with other active members of the PH community.
Step-by-Step Guide: Visiting
  1. Make a list of your elected officials
    • PHA has a helpful online tool that can help you find the information you will need. You can access it at www.phassociation.org/Take_Action.
    • Enter your zip code in the appropriate box and click "Go".
    • The following page will give you the names of your representative and senators.
    • Click on each of these names to get their contact information.
    • Note the district office address in nearest proximity to yours and record that information and telephone number.
       
  2. Order PHA briefing materials
    • Decide on the number of elected officials you will contact.
    • Order that number of briefing packets from PHA.
       
  3. Call each elected official's office on your list
    • Introduce yourself as a member of the PH community.
    • Tell the receptionist that you want to schedule a meeting to speak with the elected official about PH legislation.
       
    Sample Script to Request a Meeting

    Hello. My name is (your name). I am a constituent of (name of elected official).

    I was diagnosed with an incurable illness, pulmonary hypertension, __ years ago and would like to meet with (name of elected official) when he/she is in town to share my policy concerns with him/her about this issue.

    May I schedule a time to stop by and chat with (name of elected official) about this illness that affects hundreds of thousands of Americans and what he/she can do to help?

    Thank you.
     

  4. Meet with each elected official
    • Tell him/her about PH and your story with the illness.
    • Ask him/her if he/she would support PH legislation.
    • Leave the briefing packet with him/her.
       
  5. Thank each elected official
    • Within two days of your meeting, write a thank you letter to each elected official stressing the need for his/her support of the PH community.
       
    Sample Thank You Note

    Dear Representative/Senator,

    It was a pleasure to meet with you on (day of meeting). I appreciate you taking so much time out of your busy schedule to chat with me.

    As I mentioned, pulmonary hypertension is a chronic illness that affects the heart and lungs. Countless people may have pulmonary hypertension and not know it due to improper diagnosis. Though there is no cure for pulmonary hypertension, with increasing research and new treatments, there is hope.

    That is why the Pulmonary Hypertension Research Act is so important. It provides for collaborative action to increase public awareness and research. With earlier diagnosis and new treatments, lives will be saved.

    (If the elected official has not cosponsored the PH Research Act) I urge you to show your support of the Pulmonary Hypertension Research Act by cosponsoring it.
      - or -
    (If the elected official has cosponsored the PH Research Act) Thank you for showing your support of the PH community by cosponsoring the Pulmonary Hypertension Research Act.

    Your support is appreciated.
     

  6. Place a follow-up phone call to each elected official.
    • Within two weeks of your meeting, call each elected official's office and offer your continuing interest in his/her help. Contacting Congress

    Follow-up Call Sample Script
    (Drafted to an elected official who has not yet supported PH legislation)

    Hello. My name is (your name here). I am calling to follow-up after my meeting with (name of elected official). We chatted on (date of your meeting).

    I just wanted to thank (name of elected official) once again for his/her time and remind him/her of the importance of the Pulmonary Hypertension Research Act to countless Americans.

    Has (name of elected official) decided whether he/she will support the PH community? Could you let me know in writing where he/she stands on the issue so I can share it with other members of the PH community? My address is (your address here).

    Thank you.
     

  7. Tell PHA
    • Send a copy of the government evaluation form found at www.phassociation.org/advocacy/evalform.asp to PHA.
       
    • Upon receipt, PHA will send you a certificate of recognition and offer the opportunity to connect with other active members of the PH community.
       
  8. Maintain your relationship with each elected official
    1. Periodically write each elected official regarding new developments with PH.
       
    2. Look at PHA's online legislative action alerts www.phassociation.org/Take_Action for an updated list of developments.
Visiting Congress: Tips
  1. Dress with authority
    • Present your appearance with care.
    • Business casual style of dress is appropriate for this event.
       
  2. Include other constituents
    • There is power in numbers! Show that you are one of many constituents concerned with PH by involving others. Some options may include:
      • Circulating a petition in your community and presenting it at your meeting.
      • Inviting friends or family to come with you.
      • Getting a leader in your community (like a minister or mayor) to come with you or write a letter in support of PH legislation that you can present to the elected official at your meeting.
         
  3. Know the talking points - talking points are key messages on PH and the PH Research Act.
Talking Points

What is PH?

  • Pulmonary hypertension (PH) is continuous high blood pressure in the pulmonary artery in the lungs that results in an enlarged heart which can lose its ability to pump.
Pulmonary Hypertension is:
  • Misunderstood:The severity of PH is not recognized by insurance companies, employers or others who associate PH with common high blood pressure and not the grave illness it is.
     
  • Misdiagnosed & Under-diagnosed:
    • PH is often misdiagnosed as asthma, congestive heart disease, or chronic bronchitis.
    • PH patients visit an average of three doctors before being correctly diagnosed with PH.
       
  • Life-Altering:
    • PH affects people in the prime of their lives.
    • The typical profile of a PH patient is a woman in her childbearing years though the illness can affect people of any gender or age.
  • Costly: PH is expensive to treat. The most common treatment for PH costs over $100,000 each year.
     
  • Chronic
    • Thirty percent of PH patients do not survive beyond four years, even with the best current treatment.
    • There is no known cure for PH.
How does the PH Research Act help?
  • It increases funding for PH Research
    • This leads to further understanding of PH and new treatments for the illness.
    • Currently there are five FDA-approved treatments for PH and five more in trials. The PH gene has also been identified by researchers.
    • Medical researchers are on the brink of developing cutting edge treatments that may lead to a cure.
    • This important work must not be hindered by lack of funding.
       
  • It increases public awareness of PH
    • This aids insurance companies and others to learn about PH symptoms, effective treatments, and the resources necessary to empower communities to fight PH.
    • Most Americans have never heard of PH and do not know that symptoms such as shortness of breath, fatigue, chest pain, and dizziness are common indicators of the illness. Without that knowledge, they accept improper diagnosis and lose precious time in treating PH.
       
  • Increases medical professionals' knowledge of PH
    • This helps to decrease the number of undiagnosed patients and increase the quality of treatment for those who have been diagnosed with PH.
    • Early diagnosis remains the best defense against PH. Quality of life and effectiveness of treatment are maximized when diagnosis is made early.
    • PH patients report an average of three physician consultations before a fourth doctor makes a correct diagnosis. This process can take years, and patient health often declines sharply over this important time.
       
  • Moves us one step closer to a cure!

Better Business Bureau Accredited Charity bbb.org/charity Charity Navigator 4 Star Charity Rating best in america seal


The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

Questions about the site? email web@PHAssociation.org

Pulmonary Hypertension Association
801 Roeder Road, Ste. 400
Silver Spring, MD 20910

Copyright © 2008 Pulmonary Hypertension Association
Read our privacy policy.

For optimal viewing of PHAssociation.org we recommend the following:

PC : Windows running Internet Explorer 5.5 or higher
Macintosh: Internet Explorer 5.2 or higher
free download from Microsoft.com

  Macromedia Flash Player
free download from Macromedia.com
  Adobe Acrobat Reader 6.0 or higher
free download from Adobe.com
Patients Medical Caregivers Media What is PH