Advocacy Guide: Fight PH Through Legislative Advocacy

FIGHT PH THROUGH LEGISLATIVE ADVOCACY

“I think research and education are going to be key to curing this disease. The way we [get there] is through contacting our Congressmen and getting them behind our cause – getting their support.” --Doug Taylor

Why Advocacy?

The Legislative Process How to Advocate

Advocacy Resources

The voice of the PH community combines the personal stories of thousands of patients, caregivers, friends and medical professionals.

Your story is a powerful tool in the search for better treatments, more PH awareness and, one day, a cure. It helps us find allies in the fight for a cure, including allies in Congress.

Each year, the United States Congress decides how much money to spend on federal programs such as the National Institutes of Health (NIH), Centers for Disease Control (CDC) and the Food and Drug Administration (FDA). These government agencies fund research studies and public education initiatives that are critical to finding better treatments and a cure for PH. If we want Congress to continue to support these key programs, we have to educate them about this disease and ask them to help the PH community.

Add your voice to those of PHers across the country working to ensure that all 435 Members of Congress know how important PH research and education is to this community.

This advocacy guide is intended to help you use the power of your story as a tool to explain PH to your Members of Congress. We look forward to accompanying you on your PH advocacy journey.

Thank you for everything you do to educate Congress about pulmonary hypertension. Your efforts will make a difference for the entire PH community.

“When I stand up and share about my life with PH and talk about the help we need for research and a cure, I have become an integral part of the solution. I feel like I am actively making a difference for myself, my friends, my family and the PH community. It’s an incredible feeling, and I want everyone to feel this at least once in their PH journey.”

--Diane Ramirez, on why she educates her Members of Congress about PH legislation

LEGISLATIVE PROCESS Thousands of bills are drafted in Congress each year, and only a small fraction of them make it through the two-year legislative process to become law. The official legislative process begins when a bill or resolution is numbered – ‘H.R.’ signifies a House bill and ‘S.’ a Senate bill – and referred to committee for consideration.

Getting a bill introduced is only the first step in what can be a long journey through the legislative process. Every bill that is signed into law by the President has been read, debated and likely changed in both House and Senate subcommittees, committees, and chamber floor.

To learn more about the legislative process, visit: www.congress.gov/legislative-process.

Advocate tip: The best time to get involved in the legislative process is when a bill has been referred to committee or subcommittee. At that point, many legislators have not decided whether to support the bill yet. This is a great time to share your PH journey with your Members of Congress and request that they become a co-sponsor.

HOUSE

SENATE

Bill Introduction

Bill Introduction

Bill referred to House Committee

Bill referred to Senate Committee

Bill referred to House Subcommittee

TIP

Bill referred to Senate Subcommittee

Bills only move if it is important to the MOCs on the committee.

Sharing your story is the best way to get them to care!

Hearing on bill held in Subcommittee meeting

Hearing on bill held in Subcommittee meeting

Subcommittee votes on bill. If passed, bill sent to the House floor for debate and a vote

Subcommittee votes on bill. If passed, bill sent to the Senate floor for debate and a vote

If bill passes, bill sent to Senate

If bill passes, bill sent to House

APPROPRIATIONS PROCESS Every year, the President and Congress work together to create a budget to fund government agencies and programs for the next year. This is known as the appropriations process. Through this important process, the federal government decides how much money it is willing to spend on all discretionary spending programs.

Fact: The NIH, CDC and FDA fund research studies and public education initiatives critical to finding a PH cure.

Discretionary spending: Examples include the budgets for the National Institutes of Health, Centers for Disease Control, and the Food and Drug Administration.

The National Institutes of Health (NIH), Centers for Disease Control (CDC) and the Food and Drug Administration (FDA) are all funded through the appropriations process. These organizations fund research studies and public education initiatives that are critical to finding a PH cure.

There are five key steps to the appropriations process. In an ideal world, the process begins in early February when the President introduces his/her version of the budget and finishes by Sept. 30 in time for the start of the federal government’s fiscal year, which begins Oct. 1. If Congress fails to pass a budget before Oct. 1, they must pass a continuing resolution which funds government agencies at the previous year’s funding levels or the federal government shuts down.

In recent years, Congress hasn’t followed the traditional schedule for approving a budget. Nevertheless, having a general knowledge of the Congressional budget timeline is helpful when talking to your Members of Congress about supporting NIH, CDC and FDA funding. Whenever Congress considers legislation that affects PH research and education, they need to hear from you about how that will affect the PH community.

According to a recent study done by the Congressional Management Foundation (CMF)*, “constituents who make the effort to personally communicate with their Senators and Representatives are more influential than lobbyists and news editors.” *http://www.congressfoundation.org/projects/communicatingwith-congress/perceptions-of-citizen-advocacy-on-capitol-hill “I NEVER would have thought that I could do something like visit my Member of Congress to educate him about PH and the PH Research and Diagnosis Act. I’ve never done anything like this before!”

--Noel Holly, visiting Rep. Rohrabacher (her first ever Congressional visit!)

appropriations process FEBRUARY President proposes a budget

MARCH House proposes a budget

Senate proposes a budget

MARCH-JULY House holds budget hearings

Senate holds budget hearings

AUGUST-SEPTEMBER House and Senate come together, reconcile differences and pass budget

END OF SEPTEMBER President signs budget

“It’s so important for us to keep our Members of Congress informed with what is happening regarding pulmonary hypertension… Our senators and representatives control the laws and funding for so much that touches each of our lives – healthcare, research, drug availability and cost, social security, Medicare…The list goes on and on. Those with pulmonary hypertension cannot afford not to be part of the process.”

--Cindy Pickles

how to connect with your Members of Congress WHO ARE MY MEMBERS OF CONGRESS? It’s a good idea to familiarize yourself with your Members of Congress before you set out to educate them about pulmonary hypertension.

To find out who your senators and representatives are and locate their contact information, visit www.PHAssociation.org/ CongressionalContactInformation.

Enter your street address in our online Advocacy Action Center and press the “Go” button.

In this example, Rep. Chris

Van Hollen is the Member of Congress I want to contact.

Click on the Member of Congress’ name.

Here you can see the contact information for Rep. Chris Van

Hollen’s offices.

What’s a Health LA? A Health LA is your Member of Congress’ staff person in charge of researching and recommending health policies for the elected official.

Legislative aides are key support staff and have substantial influence on policy issues for the representative or senator. It will benefit you to establish a good working relationship with your legislator’s aide. Each one will appreciate any information you can provide to keep him or her fully informed.

Scroll down to find the Health Legislative Aide’s name in the Washington D.C. office. In this case, it’s Erika Appel.

Every Member of Congress has a Health Legislative Aide (LA) who is charged with being an expert on all health-related issues and diseases. That’s a tall order.

Not surprisingly, you may encounter a Health LA or a Member of Congress who has never heard of pulmonary hypertension. As someone who lives with this disease or knows someone who does, you can provide a valuable, first-person account of how PH affects lives. If we don’t educate Congress and let them know how they can help PHers, who will?

There are three ways to communicate to your Members of Congress: email, phone call, face-to-face visit.

how to connect with your Members of Congress

“Never doubt how important your voices are. We need to hear from you, and our bosses need to hear from you, about what is important to you. Sometimes, the reason a Member hasn’t signed on to a bill is simply that no one has ever asked. There are literally tens of thousands of bills introduced each Congress, and the easiest way to figure out which ones we need to pay attention to is by looking at the mail we’re getting and the requests that constituents are making in meetings.”--Sara Mabry, Health Legislative Assistant of Sen. Bob Casey Office (D-PA)

EMAILS TO MEMBERS OF CONGRESS Whether you’re new to advocacy or a seasoned veteran, sending an email to your Members of Congress is a great way to share your experience with pulmonary hypertension and urge them to co-sponsor legislation that’s important to the PH community.

PHA’s website has a great resource that makes sending an email to both your senators and representative quick and easy. Visit www.PHAssociation.org/Advocacy/Alerts to view pre-written, template letters. Then, spend a few minutes adapting the letter to include a story about how PH has affected your life.

how to connect with your Members of Congress TELEPHONE CALLS TO MEMBERS OF CONGRESS Calling your Members of Congress is an efficient way to urge him/her to co-sponsor PH legislation. Before making the phone call, collect the information you need: • Name of the Health Legislative Assistant • Talking points • Introduce yourself as a member of the PH community and give the aide your address (They’ll want to make sure you’re a constituent) • Using PHA’s talking points, briefly explain pulmonary hypertension and the PH bill. Share a quick personal story. For talking points on PH, see below. For talking points on the PH bill, visit:

www.PHAssociation.org/DistrictVisit/TalkingPoints

• Clearly state your position and make the ask. For example, you could simply say, “I am calling to ask that Senator X co-sponsor Y bill.”

• During the phone call, use the information you gathered to share your story and ask for support.

PULMONARY HYPERTENSION TALKING POINTS • PH is high blood pressure in the lungs.

• The blood vessels in the lungs become narrowed and the heart has to work harder to pump blood through them, making it difficult to get enough oxygen-rich blood to the body.

• PH is a life-threatening condition.

• Symptoms include breathlessness, dizziness and fatigue, and are often mistaken for those of other, less serious conditions.

• PH has no cure, but as of 2014, there are 12 treatments.

• Without treatment, the average time that PHers lived after diagnosis was less than three years.

• 20,000-30,000 individuals are being treated for PAH in the United States. While more common in women, PH can strike anyone.

Unable to Make a Visit to Your Members of Congress? Make Them Come to You!

If you have an upcoming support group meeting or special event in your area, consider inviting your Members of Congress or their staff members to attend. It only takes a little bit of forethought and flexibility, but will make for an exciting support group meeting or a great add-on to your special event AND will build support for PH legislation.

VISITING MEMBERS OF CONGRESS IN THEIR LOCAL OFFICE Face-to-face visits are one of the most effective ways to develop a relationship with your Members of Congress and to educate them about PH. Legislators have staff and offices in their home states as well as in Washington, DC. Connect locally with your Members of Congress to bring attention to issues critical to the PH community. Turn the page to find some tips to help you as you set up a meeting with your Members of Congress in their local office ot inviting them to your support group meeting or event.

BEFORE YOUR VISIT • Find out who your Members of Congress are and their contact information • Call your Member of Congress’ office and ask when they would be available to meet with you.

• Learn more about PH legislation by reviewing talking points you can use during your visit. For updated talking points on the PH bill, visit www.PHAssociation.org/DistrictVisit/TalkingPoints DURING YOUR VISIT Meetings tend to be brief (15-20 minutes) so plan out what you want to say to your Member of Congress or staff person in advance. Keep in mind, some Members of Congress or staff members may be unfamiliar with pulmonary hypertension, so it’s a good idea to tell them about your diagnosis, the medications you take and the cost of managing your PH. Make things easy by avoiding acronyms and PH jargon. If you are visiting with a group, plan in advance who will share their stories or play other roles.

AFTER YOUR VISIT Don’t forget to follow up! A couple of days after your visit, followup with your Member of Congress by sending a thank you note or giving them a phone call. If there were questions during your visit you couldn’t answer, share them with PHA, so we can follow up with the answers.

No matter how your visit goes, make sure PHA knows about it!

SAMPLE THANK-YOU LETTER Here’s a sample note for an elected official who has not co-sponsored the PH bill. You can adapt this message to send to someone who has co-sponsored the PH bill.

Dear [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL], 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 meet with me.

As I mentioned in our meeting, pulmonary hypertension is an underdiagnosed disease--it’s high blood pressure in the arteries of the lungs that can lead to heart failure. It is debilitating, it is expensive to manage, and unfortunately, there is no cure.

[INSERT SOME INFORMATION ABOUT THE BILL YOU WANT THE MEMBER OF CONGRESS TO CO-SPONSOR. For talking points: www.PHAssociation.org/DistrictVisit/TalkingPoints I urge you to show your support of the PH bill by co-sponsoring it.

Thank you.

Sincerely, [YOUR NAME] [YOUR TELEPHONE NUMBER] [YOUR EMAIL ADDRESS]

meet these friendly faces:

Congressional Staffers

FOLLOW-UP CALL Here’s a sample phone script to use to call an elected official who has not co-sponsored the PH bill. You can adapt this message to use for someone who has co-sponsored the PH bill.

“My name is [INSERT NAME] and I am calling to follow-up after my meeting with [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL]. We met on [DATE OF MEETING].

I just wanted to thank [REPRESENTATIVE/SENATOR NAME OF ELECTED OFFICIAL] once again for [HIS/HER] time and remind [HIM/HER] of the importance of the PH bill.

Has [NAME OF ELECTED OFFICIAL] decided whether [HE/SHE] will co-sponsor? I’d like to let other members of the PH community know.”

“People probably think, ‘What difference can I make?’ Listen, I’m one person. I’ve been in that Congressional office and I’ve gotten a Member of Congress to co-sponsor after my meeting. If you get to one person, you make a difference.”

--Nicole Cooper, after visit with Rep. John Sarbanes

FIVE TIPS FOR A SUCCESSFUL VISIT W I T H YO U R M E M B E R O F C O N G R E S S These guidelines will help you know how to dress, who to bring on your visit and how to manage the meeting. For more tips, visit: www.PHAssociation.org/DistrictVisit/Tips 1. Include other Constituents. It’s important for Members of Congress to know that pulmonary hypertension has a wide impact. When possible, invite a few other patients, friends, family members or community leaders to join your visit.

If others are unable is come due to health issues or lack of time, bring letters & photos written by these constituients.

2. Choose a Group Leader. Appointing a group leader is a great way to ensure that the meeting goes smoothly. At the start of the meeting, the group leader should thank the member or staff person for their time and their past support, if appropriate. Second, they should introduce the group, give a brief overview of what PH is and the purpose of the meeting (i.e., gaining co-sponsorship of PH legislation). Lastly, the group leader should be mindful of the time to make sure everyone gets a chance to talk and the Member of Congress or staff member has a chance to ask questions.

3. Be Flexible. Each Member of Congress has a Legislative Aide (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.

4. Make a Request. Members of Congress and their staff won’t know how they can help unless you tell them! Unless your visit is solely to say “thank you,” don’t forget to request co-sponsorship or make another specific ask.

5. Ask for a Photo Op. Ask your member or staff person for a photo with them. This shows that you consider their time valuable and that you would like to take with you a memory of this important meeting. Don’t forget to share your photos with PHA! Email photos to Advocacy@PHAssociation.org.

advocacy resources Stay up-to-date on PH legislation and how you can help secure our next supporter in Congress.

Join the 435 Campaign, PHA’s grassroots advocacy campaign.

Members receive action alerts, PH talking points, training webinars, online resources and personal support from PHA staff to make it easy for you to secure our next supporter in Congress. Just call 301-565-3004 x753 or email Advocacy@PHAssociation.org to let us know that you want to join and we will contact your Members of Congress a few times a year. We’ll do the rest to get you started.

Subscribe to PHA’s Advocacy in Action Alerts. These monthly e-newsletters bring PH advocacy straight to your inbox. Be the first to know about the latest PH action opportunities, get valuable training how-tos and find out about advocacy successes from other PH advocates.

Visit www.PHAssociation.org/EmailSubscriptions, enter your contact information and click “Subscribe” under Advocacy in Action Alerts.

QUICK WEB RESOURCES TO CONTACT YOUR MEMBERS OF CONGRESS • Find out who your Members of Congress are:

www.PHAssociation.org/CongressionalContactInformation/ VideoTutorial (video)

www.PHAssociation.org/CongressionalContactInformation (web page)

• Talking points about PH and PH legislation:

www.PHAssociation.org/DistrictVisit/TalkingPoints

• Send an email to your Members of Congress: www.PHAssociation.org/Advocacy/Alerts

• Set up a meeting with your Members of Congress:

www.PHAssociation.org/DistrictVisit

GET PERSONAL ASSISTANCE FOR YOUR ADVOCACY EFFORTS Contact PHA!

Call: 301-565-3004 x753 Email: Advocacy@PHAssociation.org Contact a knowledgeable Legislative Advocacy Email Mentor!

Mentors are caring and knowledgeable PH patients and caregivers who are here for you as a source of support. www.PHAssociation.org/Mentors/SearchByTopic

801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004 | Patient-to-Patient Support Line: 800-748-7274 www.PHAssociation.org | PHA@PHAssociation.org

This brochure is made possible by an unrestricted educational grant from Glaxo Smith Kline (GSK).