Learn to Lobby

1
Learn to Lobby

• The PH Communitys Guide to Successful Advocacy

2
Overview

• The United States Congress
• The Legislative Process
• The PH Research Act
• Contacting Members of Congress
• Talking Points

3
The United States Congress

• The US Congress makes laws for the entire nation.
  
  
• It is composed of two chambers - the House of
  Representatives and the Senate.

4
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.

5
The House of Representatives

• 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.
  

6
The House of Representatives

• 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).

7
The House of Representatives

• There are 435 congressional districts and one
  representative is elected in each district so
  there are 435 representatives in the United
  States Congress.

8
The House of Representatives

• 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.

9
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.

10
The Senate

• 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.

11
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.

12
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.

13
Committees

• Both the Members of the House and Senate are
  divided up into smaller groups called committees.

14
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.

15
Committees

• 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.

16
Committees

• 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.

17
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.

18
Congressional Offices

• 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.

19
Congressional Offices

• 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.
  

20
Congressional Offices

• 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.
  

21
Congressional Offices

• Congress is inactive several times a year. These
  times are 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.

22
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.

23
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.
  
• The Member who originates the bill is called the
  bills sponsor.

24
Legislative Process
Sponsors

• The bills 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.

25
Legislative Process
Co-sponsors

• 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.

26
Legislative Process
Introduction

• The bills 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.
• 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.

27
Legislative Process
In Committee

• 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.

28
Legislative Process
In Committee

• 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.

29
Legislative Process
Floor Debate

• 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

30
Legislative Process
Floor Debate

• 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.

31
Legislative Process
Voting

• 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.

32
Legislative Process
Voting

• 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.

33
Legislative Process
The President

• 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.

34
Legislative Process
The President

• 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.

35
Legislative Process
Overriding a 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 Presidents veto will be
  overridden and the bill will become law.
  
• If the two-thirds vote is not achieved, the bill
  will die.

36
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.

37
The PH Research Act
Overview

• What is the PH Research Act?
• What does the PH Research Act do?
• How can you help to make the PH Research Act
  successful?

38
The PH Research Act
What is it?

• The PH Research Act is a bill which supports the
  PH community.
  
• It was first introduced in 2000 by Rep. Brady
  (TX-8).
  
• 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.

39
The PH Research Act
What does it 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 working to develop
  treatments that may lead to a cure. This
  important work must not be hindered by lack of
  funding.

40
The PH Research Act
What does it do?

• 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.

41
The PH Research Act
What does it do?

• 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.

42
The PH Research Act
What does it do?

• Moves us one step closer to a cure!

43
The PH Research Act
How can you help?
Contact your Members of Congress and ask them
to support the bill.
44
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.

45
Contacting Congress

• There are several ways you can contact your
  Member of Congress
  
• Call or write them
• E-mail them
• Visit them

46
Contacting Congress
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 http//capwiz.com/phassociation.
  
• 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.

47
Contacting Congress
Calling or Writing

• 2) Find the name of each elected officials
  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 officials
  information.
• There is an option under each elected officials
  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.

48
Contacting Congress
Calling or Writing

• 3) Tailor your message
• When calling your elected officials 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
  
  
• Introduce yourself as a member of the PH
  community and a constituent of the elected
  official.
  
• Give a brief presentation of PH and your
  experience with this illness.
  
• Request they take action on a specific issue.

49
Contacting Congress
Calling or Writing

• 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.

50
Contacting Congress
Calling or Writing

• 5) Tell PHA
• Send a copy of the government evaluation form
  found at www.phassociation.org/advocacy/govteval
  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.

51
Contacting Congress
E-mailing

• Members of Congress use webforms instead of
  traditional e-mail in order to prevent spam.
  
• PHAs website has a feature which will allow you
  to e-mail your Members of Congress using webforms.

52
Contacting Congress
E-mailing

• 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 http//capwiz.com/phassociation.
  
• Enter your zip code in the appropriate box and
  click Go.
  
• The following page will give you the names of
  your representative and senators.

53
Contacting Congress
E-mailing

• 2) Access the e-mail feature
• Click the option titled e-mail under each of
  your Members of Congress.

54
Contacting Congress
E-mailing

• 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 your
  experience with PH.
  
• Request they take action on a specific issue.

55
Contacting Congress
E-mailing

• 4) Tell PHA
• Send a copy of the government evaluation form
  found at www.phassociation.org/advocacy/govteval
  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.

56
Contacting Congress
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 http//capwiz.com/phassociation.
  
• 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.

57
Contacting Congress
Visiting

• 2) Order PHA briefing materials
• Decide on the number of elected officials you
  will contact.
  
• Order that number of briefing packets from PHA.

58
Contacting Congress
Visiting

• 3) Call each elected officials 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.

59
Contacting Congress
Visiting

• 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
  which affects over a hundred thousand Americans
  and what he/she can do to help?
• Thank you.

60
Contacting Congress
Visiting

• 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.

61
Contacting Congress
Visiting

• 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.

62
Contacting Congress
Visiting

• 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.

63
Contacting Congress
Visiting

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

64
Contacting Congress
Visiting

• 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.

65
Contacting Congress
Visiting

• 7) Tell PHA
• Send a copy of the government evaluation form
  found at www.phassociation.org/advocacy/govteval
  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.

66
Contacting Congress
Visiting

• 8) Maintain your relationship with each elected
  official
  
• Periodically write each elected official
  regarding new developments with PH.
  
• Look at PHAs online legislative action alerts
  http//capwiz.com/phassociation for an updated
  list of developments.

67
Visiting Congress Tips

• 1) Dress with authority
• Present your appearance with care.
• Business casual style of dress is appropriate for
  this event.
  

68
Visiting Congress Tips

• 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.

69
Visiting Congress Tips

• 3) Know the talking points
• Talking points are key messages on PH and the PH
  Research Act.
  

70
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.

71
Talking Points

• Pulmonary Hypertension is
• Misunderstood The severity of PH is not
  recognized by many insurance companies, employers
  or others who associate PH with the more common
  systemic high blood pressure instead of a
  distinct grave illness.

72
Talking Points

• Pulmonary Hypertension 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.

73
Talking Points

• Pulmonary Hypertension is
• 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.

74
Talking Points

• Pulmonary Hypertension is
• Costly PH is expensive to treat. Many patients
  pay over 100,000 each year for medications.

75
Talking Points

• Pulmonary Hypertension is
• Chronic
• An estimated 50 of patients survive five years
  from diagnosis.
  
• There is no known cure for PH.

76
Talking Points

• 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 working to develop
  treatments that may lead to a cure.
  
• This important work must not be hindered by lack
  of funding.

77
Talking Points

• How does the PH Research Act help?
• 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.

78
Talking Points

• How does the PH Research Act help?
• 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 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.

79
Talking Points

• Moves us one step closer to a cure!