Advocacy Resources

The Pulmonary Hypertension Association (PHA) makes many resources available to help you be a pulmonary hypertension (PH) advocate. Browse our advocacy resources here or learn how to take action.

PHA staff are always available to supplement these resources with a personal conversation. Contact: 301-565-3004 x749 or Advocacy@PHAssociation.org.

Contact Information for Your Members of Congress

Tips for Communicating with Members of Congress

Email advocacy is the perfect first step for a new advocate and is a valuable tool for patients and supporters who don’t have the time or energy to visit their elected officials in person. PHA’s website provides an easy way to send pre-addressed emails to your Members of Congress about a variety of PH issues.

Here’s How:

  • Make a connection, and a request: Let the Member of Congress know that you are a constituent. Mention how you’ve been impacted by PH. Then, make a specific request. For example: “I urge you to support the PH Research and Diagnosis Act!”
  • Personalize your message: — share your story Legislators are more likely to support legislation when they have insight into the lives of the individuals it impacts. Personal stories can be even more powerful than facts. When sending an advocacy email from PHA’s website, watch for empty text boxes that indicate an opportunity to personalize your message.
  • Stay on message: The best way to catch your elected officials’ attention is to send them targeted, personalized messages that ask them to take action for the PH community. Including other opinions draws attention away from your primary purpose — fighting PH!
  • PHA’s action messages are pre-addressed to the appropriate Members of Congress: You do not need to send the email more than once. Remember, senators can only take action on Senate bills (S.XXX) and representatives can only take action on House bills (H.R.XXX). Messages about incorrect bills will usually be viewed as junk mail.

Phone calls are the perfect way to contact a Member of Congress about an urgent legislative action, such as a bill that will be voted on within the week. They are also a great alternative if you want to contact Members of Congress regularly but do not have email access.

When letters include part of your personal PH story, they are another powerful way to send your message. Don’t forget, though, that mail to Members of Congress often goes through an extensive screening process and may take several weeks to be delivered.

Here’s How:

  • Collect the contact information you need, including the name of the appropriate Health Legislative Assistant (Health LA). The Health LA is the staffer in charge of researching and recommending health policies for the elected official. You can find phone numbers and addresses for your Members of Congress, as well as the name of the Health LA at www.PHAssociation.org/CongressionalContactInformation or by calling PHA.
  • Plan your message. When calling it is appropriate to ask to speak with the Health LA. When writing it is better to address your correspondence to the elected official directly. Your message should consist of three key points:
    • Introduction of yourself as a member of the PH community and constituent.
    • Brief presentation of PH including your own personal story.
    • Request for action on a specific issue such as the Pulmonary Hypertension Research and Diagnosis Act.
  • Call or mail your letter. If you don’t reach the Health LA on your first call, leave a message and follow up in a few days. Tell PHA! We’d love to receive a copy of your letter and any reply you receive or to hear about your phone call. This helps us keep track of which Members of Congress have been contacted on a particular issue and where they stand. Contact Katie at 301-565- 3004 x749 or KatherineK@PHAssociation.org.

Thank you for taking the time to meet with your Members of Congress! Legislative visits are one of the most effective ways to build support for the Pulmonary Hypertension Research and Diagnosis Act, and other legislation that matters to the PH community. Here are a few quick tips to help make your visits a success.

  • Begin with a thank you.
  • Plan what to say. Each member of the group should say their name and where they are from. As time permits, group members, especially constituents, should share one or two important parts of their PH story.
  • State your request! When they hear your story, legislative staff will want to know how they can help. Your visit should include at least one request, most likely, “Please co-sponsor the PH Research and Diagnosis Act. Be sure to record the answer and share it with PHA.
  • Be flexible. Each Member of Congress has a Legislative Assistant (LA) who focuses on health issues. LA’s are knowledgeable, dedicated staff members who are worth talking to! Don’t be disappointed if you end up speaking with an LA rather than your senator or representative.
  • Request a photo. You can ask your Member of Congress to take a photo with you as a way to get a few minutes of face time if they are in the office.
  • Take questions. Record questions you can’t answer and send them to PHA.
  • Restate your requests.
  • End with a thank you.
  • Emphasize the PH community’s reach: It’s appropriate, emphasize that you represent not only yourself, but also the members of your support group and/or the patients you treat who aren’t able to attend the visit with you.

Sample Scripts and Talking Points

Sample Meeting Request/Support Group Meeting Invitation

[IDENTIFY YOURSELF AS A CONSTITUENT WITH A CONNECTION TO PH]

My name is _____ and I am a constituent of (name of elected official).

I (my spouse, my child, etc.) was diagnosed with an incurable lung disese, pulmonary hypertension, __ years ago. [IF YOU ARE A SUPPORT GROUP LEADER, MENTION THAT HERE.] [IDENTIFY THE PURPOSE OF YOUR CALL/EMAIL] I would like to meet with/invite to our support group meeting (name of elected official) to talk about pulmonary hypertension and the Pulmonary Hypertension Research and Diagnosis Act.

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

Thank you.

Sample Thank You Note

Subject line: Thank you: Follow up to our meeting

Dear Senator/Representative ____,

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 talk with me.

As I mentioned, pulmonary hypertension is a chronic, incurable lung disease. 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 and Diagnosis Act is so important. It provides a budget-neutral solution to the challenge of improving health outcomes for those living with pulmonary hypertension.

I urge you to show your support of the Pulmonary Hypertension Research and Diagnosis Act by co-sponsoring it.

Your support is appreciated.

Sincerely,

(your name)

(your telephone number)

(your e-mail address)

Sample Follow Up Call

[Send a thank you note a few days after you meet with your senators or representative. A few weeks later, if they still have not co-sponsored the PH Research and Diagnosis Act, you may want to place a follow up phone call.]

My name is _____. I am calling to follow-up after my meeting with (name of elected official). We met 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 and Diagnosis Act to countless Americans.

Has (name of elected official) decided whether he/she will co-sponsor the bill? 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, including the local PH support group?

My address is ______ and my phone number is _______.

Thank you.

Overview of the Legislative Process

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