Grassroots Advocacy Tool Kit - Courtesy of BMS

Thanks to our advocacy partner, Bristol-Myers Squibb, we are able to share a Guide to Grassroots Advocacy Tool Kit to help you become a more impactful melanoma advocate!

TRANSLATING YOUR EXPERIENCE INTO ACTION Your Guide to Grassroots Advocacy Version 1.2

NOUS1605275-01-01 12/16

TRANSLATING YOUR EXPERIENCE INTO ACTION

Your Guide to Grassroots Advocacy

CONTENTS

ADVOCACY IN MOTION

INTRODUCTION LEARNING THROUGH ADVOCACY Becoming an Advocate The Different Types of Advocacy Advocacy Is Important in Healthcare Differentiating Between Advocacy & Lobbying DEVELOPING PARTNERSHIPS The Benefits of a Collaborative Partnership Partnering Effectively with Others

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TELLING YOUR STORY How Can I Ensure I Am Heard? CONCLUSION

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RESOURCES & SUPPORT TOOLS A Planning Guide for Your Advocacy Efforts

ENGAGING WITH YOUR ELECTED OFFICIALS

INTRODUCTION PREPARE FIRST Developing Your Advocacy Plan Setting Goals & Priorities UNDERSTAND THE PROCESS How the Legislative Process Works STATE-LEVEL ADVOCACY Understanding Your State Legislature Getting to Know Your Elected Officials COMMUNICATE EFFECTIVELY The Importance of Communication

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TIPS ON STAYING CONNECTED VIA SOCIAL MEDIA PLATFORMS Facebook, Twitter, YouTube, Instagram, Pinterest UTILIZE ALL CHANNELS OF COMMUNICATION Congressional Call-In Town Hall Meeting

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Press Releases Opinion Letters Live Testimony Postcard Campaigns Social Media STAY ENCOURAGED CONCLUSION RESOURCES & SUPPORT TOOLS Federal Engagement Resources Local Media Roadmap Effectively Communicating with Elected Officials

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ENGAGING WITH REGULATORS

INTRODUCTION REGULATORY ADVOCACY vs LEGISLATIVE ADVOCACY The Difference Between a Statute, a Regulation, and Policy Guidance THE BASICS OF REGULATORY ADVOCACY Regulatory Advocacy The Rulemaking Process Healthcare Regulatory Agencies Federal Level Agencies State & Local Level Agencies Advocating within Departments of Human Services/Public Health Advocating with State Health Insurance Commissioners Advocating with Drug Utilization Review Boards THE INTRICACIES OF THE REGULATORY PROCESS Why Healthcare Regulation Is Complex

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64 ADVOCACY STRATEGIES FOR INTERACTING WITH REGULATORY AGENCIES Advocates Can Make a Difference

SUCCESS IN REGULATORY ADVOCACY A Small Group of Advocates Making a Difference CONCLUSION RESOURCES & SUPPORT TOOLS Guide: Drafting Comments to Regulatory Agencies Guide: Key Websites for Additional Information

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GROWING IN ADVOCACY INTRODUCTION 76

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EXTENDING YOUR OUTREACH The Importance of Getting Others Involved ENGAGEMENT THROUGHOUT THE YEAR Local Events Community Fundraising

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Research Advocacy Program Congressional District Meetings Volunteering Lobby Day or Advocacy Day Webinar Series Social Media Public Meetings Advocacy Scholarships Online Calendar THE IMPORTANCE OF CELEBRATING YOUR SUCCESS THE LOOK OF SUCCESS Successful Examples of Advocacy Efforts by Patient Organizations CONCLUSION

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RESOURCES & SUPPORT TOOLS How-To Guide for Developing Other Advocates Advocate Template for Sharing Stories and Successes

TOOLKIT

EXAMPLES Press Release Coalition Letter Letter to a P&T Committee Written Comments to the FDA Testimony to a Public Health Committee Live Testimony Testimony to Congressional Committee Written Comments to State Health Department

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ADVOCACY IN MOTION

CAN MY VOICE REALLY MAKE A DIFFERENCE?

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INTRODUCTION

Can the power of your story have an impact? Whether you are a patient, family member, caregiver, healthcare provider, or an advocacy organization, the answer is YES. In this guide, you will learn: 1) A basic understanding of advocacy 2) The importance of advocacy 3) How your voice and actions can directly affect your community, your state and the nation 4) The difference between advocacy and lobbying This guide will share the important steps to make sure your voice is not just heard, but heard by the right people. You and your story are an important part of the advocacy process. As you read through the guide, keep your story and experiences in mind. Your voice and the collective voices of those with common interests can affect important healthcare issues.

Will sharing my story make a difference for others like me?

Do people really care about what I have to say?

Can my experiences really help others, and potentially influence the way future patients are treated?

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LEARNING THROUGH ADVOCACY BECOMING AN ADVOCATE

• Through advocacy you can use your personal experiences and experiences of those around you to collectively voice concerns to positively impact public policy. The principal aim of advocacy is to draw attention to an important issue or cause by educating key decision makers about the impact of those decisions on everyday people. You can advocate on a state or national level by discussing issues directly with your elected officials, regulators, and other policy makers. As advocates, your voice and actions can be vital in delivering messages for those who can’t. It’s your voice and actions that make a difference in shaping healthcare policy and initiatives. You have the ability to shine a spotlight on a cause or an issue that may have previously received little attention, and policy makers and regulators will pay closer attention when they hear stories from individuals about their own personal experiences. Your voice and actions can ensure that your rights are upheld, and that issues you think are important don’t go unnoticed. Policy makers look for ways to better understand the issues that are important to their constituents, and regulators are open to hearing how the law and policies that they implement have a direct impact on patients. And it is your voice and actions that can help them do just that! How Important Are Voice and Actions?

An advocate is an individual who stands up for – and supports the rights of – another individual or group of individuals. You can be your own advocate or you can advocate on behalf of other people with similar interests or concerns. Have you ever encouraged another person to learn more about a particular issue? You were an advocate, helping to educate others. Have you ever asked questions to your doctor about your own treatment, or the treatment of a loved one? You were an advocate, learning more about your disease. Advocates can take on many different roles, including: • Looking out for the best interests of a family member going through treatment • Speaking in a public forum for a particular issue or cause that’s important • Meeting with an elected official, regulators, or other policy makers about an important healthcare issue What Is Advocacy? Advocacy is an opportunity to educate others about an issue or cause that is important to you. Advocacy can begin with the concept of an idea and can continue all the way through the legislative process until that idea becomes law. Advocacy carries over into the development of rules and regulations through the regulatory process. • Through advocacy you can engage with elected officials when they are in the process of making laws, and with regulators as they go through the process of implementing those laws. • Through advocacy you can educate elected officials, regulators, and other policy makers who make decisions that affect people’s lives.

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THE DIFFERENT TYPES OF ADVOCACY

There are many different approaches to advocacy. Each type of advocacy has the potential to build a foundation for another level of advocacy.

CONSTITUENT: A member of a district or a community. DISTRICT: An area of a county or city.

TOWN HALL MEETING: An organized meeting within your community. LEGISLATOR: An individual who develops policy as an elected official on behalf of their community and/or constituents. Also referred to as policymaker.

INDIVIDUAL & PERSONAL ADVOCACY

STATE ADVOCACY

Personal advocacy can be done by an individual on their own behalf or for a family member or a friend. An individual or personal advocate looks out for the best interests of a patient as they move through the treatment of their disease. A personal advocate can be a family member, close friend, co-worker, or healthcare professional. An advocate can help ensure a patient understands the different types of medications that are prescribed, assist in tracking the side effects of medications, and listen closely when meeting with members of the patient’s healthcare team. This individual can also help a patient understand their rights and ensure those rights are upheld. Advocating at the federal or national level within the legislative regulatory processes is equally important. On a legislative front, it can be accomplished in your elected official’s home district or on Capitol Hill in Washington D.C. Within the regulatory process, it can be accomplished through patient interaction with the FDA, other government agencies or national organizations. It is important that the people who are part of the legislative and regulatory processes hear stories from those who are personally affected. It is your personal story tied in with facts about your own experience that can bring elected officials and regulators to become emotionally engaged with a particular issue. Your advocacy efforts may focus on a letter campaign or petition for change, or they may focus on a congressional ‘call-in’. There are multiple ways to ensure your voice is heard within the legislative and regulatory processes. For examples of ways to advocate within the legislative process, reference chapter on Engaging with Elected Officials. For examples of ways to advocate within the regulatory process, reference chapter on Engaging with Regulators. FEDERAL / NATIONAL ADVOCACY

There exist opportunities to engage with elected officials and regulatory agencies at the state level. Research and determine if there are any state- level advocacy organizations or associations that are already tackling your issue before starting this journey on your own. The collective voice can be very powerful, and this may be a more effective way of accomplishing your goal than going it alone. Communication with your state legislators and regulators can have a significant effect on healthcare issues. As a resident of your state, you are a constituent to whom elected members of the legislature have a responsibility. Elected officials and their staff carry out that responsibility by meeting with their constituents and hearing their stories or concerns. On the state level, regulatory agencies carry out their responsibilities through state health departments, state insurance agencies, state medical and pharmacy boards and other agencies. An advocate’s voice can make a difference within all of these agencies, and on all of these boards. To learn about advocating within these regulatory bodies, reference chapter on Engaging with Regulators. Local community advocacy involves bringing attention to a particular issue that might affect others within your community. It can involve the creation of programs and services to educate your community and raise awareness of the cause. Through this type of advocacy, partnerships and collaborations can develop that help influence both the development and implementation of public policies. By bringing people together in your local area or organizing a town hall meeting, you can increase the awareness of a healthcare issue through collective voices. To learn more about organizing a town hall meeting, reference section on Engaging with Elected Officials. LOCAL COMMUNITY ADVOCACY

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Advocacy Is Important in Healthcare

Lobbying involves activities that are in direct support of, or opposition to, a specific legislative or regulatory proposal. While it may be permissible for an advocacy organization to engage in some form of lobbying; however, it is important to remember the IRS has very strict rules about what portion of an organization’s budget can go toward lobbying activities without an organization losing their non-profit, 501 (c)(3) status. Before engaging in any sort of lobbying activities, check the laws in your state to ensure you are in compliance. Research online to learn more about established advocacy organizations that might be tackling an issue that is important to you or a loved one. Often local and national advocacy organizations have their fingers on the pulse of healthcare issues. Seek out advocacy organizations have a track record of looking out for the best interests of patients’ healthcare rights.

Healthcare is a myriad of complex issues. It aims to deliver excellent quality care that should be delivered without disparity. Advocacy in healthcare is one way to ensure that policies and regulations have the outcome that elected officials and regulators initially intended and that patients receive the healthcare they need. With the implementation of the Patient Protection and Affordable Care Act (ACA), there has been a new emphasis on measuring patients’ experiences of care and use of that information to improve care. The ACA encourages healthcare providers and patients to work together to make more informed treatment decisions based on an understanding of available options, each patient’s circumstances, beliefs, and preferences. This is a critical time for patients to be educated and engaged in their own healthcare decision making. Advocacy in healthcare is an important and ongoing process involving many stakeholders. As the healthcare system continues to change, it is important to support and promote patient protections and to oversee healthcare policies and initiatives to ensure sound policy development. Distinguishing Between Advocacy and Lobbying All lobbying is advocacy, but not all advocacy is lobbying. Lobbying is an attempt to influence specific legislation. Advocacy involves a much broader range of activities. Through advocacy, organizations and those they represent can help elected officials find specific solutions to persistent problems. Advocacy organizations can and should take advantage of their ability to advance issues important to their constituents, and education is a critical part of that success.

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OK, I THINK I’M READY TO BE AN ADVOCATE. WHAT’S NEXT?

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DEVELOPING PARTNERSHIPS

A collaborative partnership involves people and groups working together to achieve a common goal. A collaborative partnership provides mutual benefits for each of its partners and allows each partner to utilize its resources more effectively.

1) What do you hope to gain from this partnership? 2) Do you share common goals and

expectations? Will this partnership allow you to stay true to your original mission or goal? 3) Have you established a clear understanding of the roles and responsibilities? 4) Is there a natural fit between the individuals or groups so they complement each other? What makes this relationship mutually rewarding? 5) Will you be able to trust and openly communicate with your potential partner(s)? TIPS ON HOW TO PARTNER SUCCESSFULLY 1) Choose partners with whom your organization has a connection 2) Create a detailed plan of what you expect a partnership to accomplish 3) Promote your partnership online and in print materials

The Benefits of a Collaborative Partnership

By thinking, planning, and working together, individuals and groups can achieve goals that neither can do alone. Partnering with others can increase the volume of your voice while providing diversity to your messaging. A collaborative partnership will combine different perspectives from a variety of individuals or groups, and can lend credibility and strength to your end message or goal. In any collaborative partnership, it is important to identify the key stakeholders who share an interest in your issue and investigate whether collaboration makes sense. Individuals with a common interest may provide a perspective that you or your group has not yet thought of. Partnering Effectively with Others Before you consider the idea of a partnership, it is important to identify your organization’s strengths, available resources, and areas of expertise. This will allow you to seek out individuals and groups that will compliment your missions and goals. Establishing collaborative partnerships can provide a structure for planning and implementing ideas while working toward a common goal. Here are some considerations to think about when developing a successful collaborative partnership:

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TELLING YOUR STORY HOW CAN I ENSURE I AM HEARD?

1. PREPARE

Before you can begin to tell your story, preparation and careful planning is key. As you advocate for something or someone, the story you tell is part of a larger story. Focus only on the highlights of your story – the meaningful parts that enable a listener to connect with you. Practice telling your story in 10 minutes, then practice telling it in 5 minutes, and then envision having to tell in 2 minutes. Some of your greatest moments in advocacy might stem from the personal story you reduced to just a 2 minute discussion in an elevator!

3. FOLLOW-UP

2. ASK

Follow-up may vary, but the act is crucial. For example, follow-up with individuals within your community might include sending additional information on the issue at hand. Following-up with your elected official or regulatory agency may simply be a note to thank him or her for their time. Follow-up leaves the door open for future communication or interaction; answer any questions they may have asked, remind them of your visit, and tell them you are looking forward to the next time you meet.

Always plan to ask your listener to do something. If talking to your community, your ask might be for their vote or for them to learn more about an issue. When talking with patients, your ask might be to form a coalition. And if meeting with your elected official or a regulatory agency, your ask may be as simple as “Please consider my point of view.” Regardless of whom you are meeting with or talking to, be prepared and ask them to do something!

For tips on crafting your own message, refer to the resource and support tool, A Planning Guide for your Advocacy Efforts: Crafting your message. For more information on direct meetings with elected legislators and the legislative process, refer to section on Engaging with Elected Officials.

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CONCLUSION

Additional Online Advocacy Planning Resource Tools American Planning Association www.planning.org/advocacy/toolbox/ advocacymeetings.htm The Aspen Institute www.aspeninstitute.org/policy-work/apep/tools A Planning Guide for Your Advocacy Efforts: This guide will assist you in: • Clarifying the goal of your advocacy efforts • Defining your audience • Developing your key messages • Identifying potential partners who can assist you along the way • Outlining what your advocacy efforts will accomplish

Regardless of who or what you are advocating for, getting started and taking your first steps may be hard. At the end of this guide, you will find resources and support tools to help get started. Identifying clear steps to take when beginning any advocacy effort is crucial. This tool will serve as a guide for your advocacy efforts through consideration of all important aspects of your plan. You have already taken the first step in effective advocacy: understanding what advocacy is, and how to go about it appropriately. Advocacy is crucial to ensuring that healthcare policies and initiatives are meeting the healthcare standards that were intended. People will listen. Whether you find yourself advocating for a family member or for a policy change, your voice is critical to the process.

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RESOURCES & SUPPORT TOOLS

A Planning Guide for Your Advocacy Efforts

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A PLANNING GUIDE FOR YOUR ADVOCACY EFFORTS

1. IDENTIFY & PREPARE

A. UNDERSTAND YOUR VISION AND MISSION

B. IDENTIFY YOUR ISSUE

C. ASSESS YOUR AREAS OF STRENGTHS AND WEAKNESSES

2. WHAT IS YOUR END GOAL?

A. MOBILIZING OTHER ADVOCATES

B. INFLUENCING A STATE PROCLAMATION

C. ARRANGING A MEETING WITH A POLICYMAKER ON AN ISSUE

D. GETTING A CERTAIN NUMBER OF ADVOCATES TO PARTICIPATE IN A CALL IN

E. SUBMITTING COMMENTS TO A REGULATORY AGENCY

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3. DEFINE THE TARGET GROUP

A. OTHER PATIENTS OR ADVOCATES

B. MEDIA (E.G., NEWSPAPER, RADIO STATIONS)

C. LOCAL COMMUNITY LEADERS AND CONSTITUENTS

D. LEGISLATORS OR REGULATORS

4. DO YOUR RESEARCH

A. WHO DO YOU NEED TO HELP YOU ACCOMPLISH YOUR END GOAL?

B. ARE THERE OTHER ORGANIZATIONS OR ASSOCIATIONS TACKLING THIS ISSUE?

C. DO YOU HAVE THE RESOURCES AVAILABLE TO ACCOMPLISH THE GOAL?

D. ARE THERE POTENTIAL COLLABORATIVE PARTNERSHIPS TO FORM?

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5. DEVELOP YOUR MESSAGE

A. CONSIDER THE AMOUNT OF TIME YOU’LL HAVE TO DELIVER THE MESSAGE

B. DEVELOP CLEAR AND SPECIFIC TALKING POINTS

C. DETERMINE WHO WILL DELIVER THE MESSAGE

6. EFFECTIVELY DELIVER YOUR MESSAGE

A. IN PERSON

B. ON THE PHONE

C. EMAIL

D. LETTER

E. SOCIAL MEDIA (E.G., TWITTER, FACEBOOK)

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7. HOW WILL YOU MEASURE SUCCESS?

A. DID YOU ACHIEVE YOUR GOAL?

B. IF NOT, HOW WILL YOU MODIFY YOUR APPROACH?

C. WHAT WILL YOU DO DIFFERENTLY NEXT TIME?

D. WAS IT A SUCCESS?

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NOTES

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NOTES

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NOTES

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ENGAGING WITH YOUR ELECTED OFFICIALS

“MY STORY MATTERS”

“MY VOICE IS IMPORTANT”

“TOGETHER, WE CAN MAKE A DIFFERENCE”

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INTRODUCTION

There are different levels of success in advocacy – you will quickly see how the pieces fit together and how one success can lead to more. Successful advocacy requires careful thought and planning. This guide will review the importance of developing your own advocacy strategy prior to mobilizing your advocates. The first step to a successful strategy is creating an advocacy plan and learning where you can make a difference in the legislative process. This guide will also help you understand the importance of state level and congressional committees, and will provide you suggestions on ways to engage with these committees. Whether you choose to engage by telephone, mail, email, or in person, this guide will provide specific suggestions on the most effective ways to accomplish your goals. Finally, this guide will highlight additional strategies for meaningful communication, such as press releases, editorials, live testimony, and use of social media. Many elected officials utilize social media to communicate their priorities and keep a pulse on what is important to their constituents. Social media is another way to learn more about your elected official and to communicate what is important to you, their constituent. This guide focuses on: 1) The importance of developing your advocacy plan 2) How the legislative process works 3) How and when to engage in the legislative process 4) Appropriate use of all channels of communication

Elected officials make decisions every day about healthcare issues that affect the lives of patients. Help inform their decisions. Embrace the process, plan carefully, focus on making the biggest impact, partner with others as you go and have fun along the way.

Your story CAN change lives.

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PREPARE FIRST DEVELOPING YOUR ADVOCACY PLAN

• Is there an elected official who has engaged on this issue in the past? Keep a list of these individuals. As you move forward with your advocacy efforts, you will know who to contact at the appropriate time.

Your legislative advocacy plan is your road map to the end goal. This guide will focus on the impacts of your advocacy efforts within the legislative process and on Capitol Hill. Once you have mastered that process, you can apply those skills to other types of advocacy, such as in the regulatory setting or within your local government. Your legislative advocacy plan (also referred to as legislative priorities) should align with the overall mission of your organization. Your plan should highlight priorities to be addressed in legislation, and should outline the ways your organization plans to work with elected officials to ensure these issues are addressed. Setting Goals & Priorities You or your organization may have different priorities that you hope to achieve. Aim high! Create goals that might take time to achieve, as long as you can clearly identify your goal and your plans to achieve it. In addition to long-term goals, set short-term goals – goals that you can achieve within a year or two. Your goal might be to simply increase awareness about an issue, or secure increased funding for a cause. It’s important to have your legislative priorities set before you begin to engage others, because your goals will influence the ways in which you advocate. Once you have established your legislative priorities, research which elected officials — either in your local government, state legislature, or in Congress — might help you champion your cause. When identifying which elected officials to engage, consider the following questions: • Is there an elected official who has a personal connection to your issue? • Is there an elected official you can influence?

REGULATORY: The rules of how a law is enforced through a government agency.

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A bill is written, given a bill number and introduced in either the House or the Senate.

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The bill is assigned to a committee who is in charge of the topic or issue area.

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THE 5 BASIC STEPS IN THE LEGISLATIVE PROCESS

The committee meets and may review the bill, hold a public hearing on the bill, make any necessary changes to the bill and then vote on whether or not to approve the bill and send it to other committees for further review.

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UNDERSTAND THE PROCESS HOW THE LEGISLATIVE PROCESS WORKS

Gaining an understanding of how laws are made will help you determine where your advocacy efforts can have the greatest effect. Although there may be slight differences, there are five basic steps in the legislative process and it all begins with an IDEA. The idea doesn’t have to come from an elected

official; it can come from an advocate or an advocacy organization. If you can gain the support of elected officials with your idea, they can initiate the process of drafting a bill. And keep in mind, this process may take years and several legislative proposals.

BILL: A draft of a proposed law. CHAMBER: Either the House of Representatives or the Senate.

If the bill has continued support, it is placed onto the calendars of either the House or the Senate for debate, and also goes through budget approval with that chamber .

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Once both chambers agree on the language of the bill, it goes to the Governor (or the President at the federal level) to be signed into law.

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If the bill still needs continued support, it goes to the other chamber and repeats the process.

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STATE-LEVEL ADVOCACY UNDERSTANDING YOUR STATE LEGISLATURE

Getting to Know Your Elected Officials Building a strong relationship with your elected official and their staff is an important aspect of advocacy. Before meeting with them, you will want to do some research. On your elected official’s website, you can learn more about their positions on particular issues and different pieces of legislation. Learning more about them will allow you to effectively communicate with them by considering their background and areas of interest. Here are some facts you will want to learn about key legislators: • Their political party • Their tenure in office • Their specific committee assignments • Their priority issues of concern • The legislation they have sponsored or championed in the past Take the time to complete this important research. Not only will they appreciate you taking the time to learn about their positions on certain issues, but it will allow you to frame your issue in a manner that will resonate with them.

The process for the passage of a bill is similar at the federal and state levels. A bill passed by Congress is signed (or vetoed) by the President; a bill passed by your state’s legislature is signed (or vetoed) by the Governor. Most state legislatures are structured similarly to Congress; each state legislature has both a House and a Senate with the exception of Nebraska, which is unicameral . Just like in Congress, state legislatures also have committees that focus on specific topics, such as healthcare policies. As bills move through state legislatures or Congress, they rely on the expertise of committee members to determine how policy should be addressed. These committees can make adjustments and changes to a bill before it is voted on. They help to organize the most important work of legislation — considering, shaping, and passing laws to govern the state/nation. 1 To learn about your state’s legislature structure visit: openstates.org/find_your_legislator/, and enter the name of your state. Study your state’s legislative structure and the committees in place that might review a bill of interest to you. Learn about the members of each committee, the committee chair and staff. Committees hold public hearings on their respective areas of authority and these hearings are a great opportunity for advocates to make an impact on the legislative process.

UNICAMERAL: Having a single legislative chamber.

1 http://www.ushistory.org/gov/6c.asp

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COMMUNICATE EFFECTIVELY THE IMPORTANCE OF COMMUNICATION

Communication with elected officials is tracked by their offices and allows offices to keep a pulse on important things happening within their district and with their constituents. Phone calls about issues may be categorized, letters may be compiled, and emails may be counted. Officials care what their constituents have to say, and your communication with them can be vital in bringing attention to an issue that they may not be aware of. However you choose to communicate with elected officials (phone, mail, or in person) consider these helpful tips: Communicating by Phone Contacting your elected official on the phone is easier than you might think. If you are trying to connect with someone in your state legislature, visit their website and their number will be listed there. Before you make a call to an elected official’s office, be clear on the following: 1) Why you are calling Always ask to speak with your elected official, and if they are unavailable, talk with their staff member. Rest assured, your conversation with that person in his/her staff makes a difference! The office staff is very important, so get to know them well! They have the ears of the elected official and can help facilitate interactions with them. Communicating by Mail or Email Writing a letter or an email to an elected official can be a very effective form of communication. Your 2) What issue you are calling about 3) What you would like them to do

2) A request for their specific action 3) Relevant bill numbers 4) Your story: don’t threaten; be polite, clear, and concise 5) An offer to serve as a future resource if they have any further questions Given security measures surrounding mailed letters to elected officials, you might want to consider an email as your preferred method of communication, rather than a mailed letter. Communicating in Person Face-to-face meetings with elected officials can be a very effective form of communication. A personal connection engages them in a way that no other form of communication can. You can set up your own meetings by calling your elected official’s office directly. Once you have a meeting date set, begin your preparation! Organize your thoughts and develop key talking points. See below for tips on conducting your meeting. Most importantly, remember this isn’t a political meeting. Leave politics out. The elected official should remember you and your story, not your political affiliation.

letter or email should have 5 basic parts: 1) Appropriate address and salutation

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Conducting Your Meeting Develop an agenda for your meeting. Here is an example of an agenda: 1) Introductions 2) Explain why you are meeting with them 3) Tell them your story or personal connection 4) Be clear on what you are asking them to do

5) Answer questions openly and honestly 6) Leave information behind that provides additional facts 7) Provide your contact information 8) Thank them for their time

The most important part of your advocacy might not even take place while you’re in the meeting. It can come in your

Do not underestimate the impact one effective meeting and effective follow-up can have on the legislative process. To learn more about training your advocates for meetings with their elected officials, reference the chapter on Growing in Advocacy. follow-up! This is a crucial part of the process. In follow-up, you can remind them of your visit, encourage them to look at your leave behind and ask if they have had a chance to do what you’ve asked. Your meeting and follow-up with them is an important step in your advocacy efforts. Your successes may come at different times throughout this entire process. Recognize your successes along the way and celebrate them.

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Twitter is a platform that allows you to share “snippets” of information in a limited number of characters, called “tweets.” Many congressional offices have Twitter accounts and you can “follow” them to see what important issues they are working on. Twitter allows you to use “hashtags” (#) to help you categorize topics that are important to you. And if you see a post that you like or support, you can “retweet” it and immediately share it with your other followers. Join Twitter at www.twitter.com Example of a Facebook or Twitter post to your elected official: “I am a constituent in your district, and I support bill number XXX. Please consider supporting it too by co-signing.” If this is a Twitter post, follow it with a relevant hashtag. TWITTER Facebook is a social media platform that allows you to connect with others and share stories. Facebook has over 1 billion monthly users - even Congress has a Facebook page: www.facebook.com/congressorg. You can utilize Facebook to directly connect with your elected official and join in discussions by posting or commenting on their walls. Join Facebook at www.facebook.com FACEBOOK YouTube is a video sharing platform where you can share your videos and view videos that others have taken. Many congressional offices have YouTube “channels” where they post important videos. If your Congressional office has a channel, you can subscribe to it to stay connected with them. Join YouTube at www.youtube.com Here is an example of how you can keep up with your elected official via their YouTube channel. www.youtube.com/user/RepJoeBarton YOUTUBE Instagram is a picture sharing social media platform. You can take pictures and videos and share them with your followers. Instagram can only be used with a smart phone, but it’s a fun way to share experiences and to see in pictures of what your followers are up to. Join Instagram at www.instagram.com INSTAGRAM TIPS ON STAYING CONNECTED VIA SOCIAL MEDIA PLATFORMS Pinterest is a visual social media platform, similar to that of a virtual scrapbook. It allows you to visually share ideas or topics that are important to you. You can create “boards” for each area of interest. For example, if there is a cause that you are advocating for, you might create a message board for that cause that you can share with others. Join Pinterest at www.pinterest.com Here is an example of how you can learn more and create boards for certain topics of interest: www.pinterest.com/search/?q=arthritis PINTEREST

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UTILIZE ALL CHANNELS OF COMMUNICATION

CONGRESSIONAL CALL-IN If advocates cannot make the trip in person to meet with their Congressmen/women, your organization can arrange for a “Congressional Call-in.” Through this form of communication, you can encourage anyone involved with the cause to call their Congressmen/women’s office on a specified day and ask for support for a particular issue or cause. This type of call-in can be effective in raising awareness of an important issue. Here are some tips on setting up a Congressional Call-in: • Set a goal: For example - To flood members of Congress with phone calls about an important issue. • Pick a time period: Hold it separate from a regular lobby day to increase participation. It can be just one day, or last an entire month. • Set up technology: Work together with a company who will set up the phone number and the automated system message. • Partner: Partner with other groups or associations with a common interest in the cause. • Promote: You will need to make hundreds of calls/callers to have an impact on offices. Promote via mailed fliers and social media. • Make the call: Develop a script for your advocates to follow that includes short talking points. First thing they should do is identify themselves as a constituent, then say the talking points of why they are calling. • Track your progress: Use online tools to update advocates. This will show which states/ districts have called in and where you need more callers so they can recruit friends and family to call. Try to get callers from every state!

• Follow up: Have your advocates follow up after the calls with a thank you to the office for listening to their concerns. Repeat the ask from the call. TOWN HALL MEETING You can bring people together in your local area by organizing a town hall meeting. This event can help you increase the awareness of a healthcare issue by educating your community as a whole through the use of selected speakers, panelists, experts, and patient representatives. Here are some tips on setting up a town hall meeting: • Develop a planning committee, meeting objectives, an agenda, and meeting materials to be distributed at the meeting. • Identify staff, speakers, panelists, moderators, and media spokespeople for your event. • Plan logistics: Find a location, set a day and time for your event, and create an invitee list. • Promote your event within your community: Place signs around town and in community hospitals. • Promote your event to the media: Create a press release, call local media outlets, and contact your local newspaper. • Promote your event on social media: Provide registration table, with sign in list and attendee contact information. Identify staff to welcome attendees, start on time, and finish on time. • Follow up: Send a thank you to attendees with a summary of the event, including who attended, what was accomplished, and any action items or next steps. information on how to register/attend. • Execute: Arrive early to set up, set up a

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PRESS RELEASES Don’t be put off by the words ‘press release.’ You don’t have to be a journalist to write a press release. Think of a press release as a way to educate a reader or help a journalist write an article about your event or issue. If written well, it might pique the interest of a newspaper or a news station to cover your event or story in more detail. Here are some tips on writing a great press release: • Create an eye-catching, accurate headline For example: Good headline: Advocacy groups join forces to make a direct impact on saving the lives of patients. Bad headline: Local group strives for change. • Tell your story (briefly) and establish your connection to the issue • Use quotes from someone impacted personally by the issue • With their permission, quote an elected official, if they were involved • Provide your contact information • Tell the reader where they can go to learn more OPINION LETTERS An op-ed is an opinion piece usually written for a newspaper that is balanced with factual information. Write clearly and concisely, but assume the reader knows nothing about your issue. Your op-ed should focus on one point and have one objective, and help readers understand why this issue should be important to them. Every newspaper will have guidelines on how to submit an op-ed; know these guidelines and follow them. Here are some tips on writing a great op-ed: • Create an eye-catching, accurate headline For example: Good headline: 55 Years of Advocacy Told in 55 sentences. Bad headline: How advocacy can make a difference.

• Tell your story (briefly) and establish your connection to the issue • Get to the point quickly

• Develop 2-3 main talking points • Close with a powerful conclusion LIVE TESTIMONY

Live testimony at a public hearing can provide information to elected officials about how a law (or change in a law) might affect you and others. All committees often hold public hearings, and this an area where advocates can have their voices heard. By visiting the website for your local or state government, you can find the list of upcoming public hearings addressing key policy areas. Here are some tips on preparing for a live testimony and check out the resources and support tools at the end of this chapter: • State your name and any associations or organizations you are affiliated with • Incorporate your story into the message • State why this issue is important to you and others • Support your story with facts about the issue • Be specific about what you are asking them to do • Thank them for the opportunity to speak POSTCARD CAMPAIGNS Postcards aren’t just for telling your friends and family about the terrific time you are having on your vacation. Postcards can speak volumes to elected officials about issues important to their constituents. If there is an important issue to your organization, a postcard campaign can be a very effective and efficient way of allowing your advocates to express their opinions. Create a postcard with an eye-catching headline or picture that addresses your issue on the front, and allows your advocates to add their personalization of it on the back. Consider enabling your advocates to download the postcard from your website where you can provide instructions on completing and sending their postcard. Here are a few tips on creating a great postcard campaign:

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• Create an eye catching cover • Pre-stamp the postcard • Develop a postcard slogan related to your cause • Leave an area for personalization by your advocates • Make sure your advocates include their name and mailing address • Set a deadline for when advocates should mail their cards to their elected officials SOCIAL MEDIA Outside of the other forms of communication mentioned above, the rise of social media has changed the way we communicate with each other, the way we learn about events and the way we live our daily lives. You can share pictures and videos the minute you take them and you can make your opinion known within the instant that you form one. Given the popular rise of this communication channel, social media is just another way you can stay connected to your elected officials. Many elected officials utilize social media to keep a finger on the pulse of what is happening in their districts and states. You can utilize social media to ensure your virtual voice is heard. There are many tips on page 37 for staying connected through social media platforms like Facebook, Twitter, YouTube, Instagram, and Pinterest. Social media does not replace the other channels of communication such as in-person meetings, mailings, and emails. Discover how to use each platform effectively and start communicating!

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REMAIN ENCOURAGED

When you advocate, you are promoting change and this may take time. Advocacy is hard work and you will have to overcome obstacles. People will tell you no, and at some point may feel like your voice is not being heard. Don’t get discouraged! Focus on what you have accomplished and the impact you have made, and let that be the driving force behind your work. Remind yourself of who or what you are advocating for, and remember the passion which drove you to take on the challenge; allow this to carry you through any difficulties. This will be the thing that carries you through the tough times and help you overcome any obstacles. Once you know your end goal, you

can take (follow) many different paths to reach it. Think of advocacy like a GPS. You enter in your destination, and it gives you options on how to get there. If you veer off track, it recalculates for you. Sometimes you will have to make those same recalculations in advocacy. Consider all options, and recalculate if necessary. Be sure to talk with other advocates and share your successes and frustrations. Advocacy can be frustrating, but can also be incredibly rewarding. Have a well thought out plan; understand the legislative process; know where you can affect it and be persistent. You are making a difference!

CONCLUSION

Effective communication with elected officials is critical to advocacy success. Just like the legislative process, advocacy is a process, and it may take time to see change. Carry something with you at all times that you can look at, feel, and touch to remind you why you spend your time advocating. Maybe it’s a picture of a loved one, a token that another patient not strong enough to fight gave you, or maybe it’s your own heart that has a story to share. Tell that story with every ounce of compassion you have. These are the things that will give you strength and carry you further,

even when you think you’ve reached the end of a road. Your elected officials will appreciate the firsthand knowledge of how the policies they helped to create affect patients’ lives. They thrive on for information and you can be a resource for them. You can help to bridge the gap between elected officials and their constituents. Push for change, stand up for those who can’t, and demand attention.

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RESOURCES & SUPPORT TOOLS

Federal Engagement Resources Local Media Roadmap Effectively Communicating with Elected Officials

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FEDERAL ENGAGEMENT RESOURCES

Everything you have learned at the state level can be applied and translated at the federal level. To learn more about your member of Congress: www.govtrack.us/congress/members Track social media (e.g. Twitter) and press releases Review committees they serve on & caucuses they have joined To learn about Congressional House and Senate sessions: House schedule (annual) www.majorityleader.gov/floor/#annual House schedule (weekly) www.majorityleader.gov/floor/#weekly House schedule (daily) www.majorityleader.gov/floor/#daily Senate schedule (annual) http://www.senate.gov/legislative/ 2017_schedule.htm Senate schedule (weekly and daily) democrats.senate.gov/floor/floor-updates/ To learn about important Congressional committees related to healthcare: House Appropriations

Senate Finance www.finance.senate.gov/ House Ways and Means waysandmeans.house.gov/ House Budget budget.house.gov/ Senate Budget www.budget.senate.gov/ To connect with your member of Congress on the phone: phone numbers for each member of Congress: o Find Senators information: www.senate.gov o Find House of Representatives information: www.clerk.house.gov To write to your member of Congress: • The Honorable (insert name), followed by the U.S. House of Representatives, or the U.S. Senate • Dear Representative (insert last name), or Dear Senator (insert last name) To learn about Congressional Caucuses: You will also want to know if there is a Congressional Caucus that might help you advance your particular issue. For example, there is a Childhood Cancer Caucus, Congressional Caucus for Women’s Issues, a Congressional Hispanic Caucus, a Congressional Caucus for Parkinson’s Disease, and a Crohn’s and Colitis Caucus.When you do your research online about your elected official, it will list if they are a member of a Congressional Caucus. • Call the Capitol! The switchboard will connect you to any of your members’ offices, at 202-224-3121. • Visit the website below, for a listing of

appropriations.house.gov/ Senate Appropriations

www.appropriations.senate.gov/ House Energy and Commerce energycommerce.house.gov/ Senate Health, Education, Labor & Pensions www.help.senate.gov/

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Do your research before your meeting to get to know your elected official and understand their positions on issues.*

Trust in your story and don’t exaggerate it. It stands on its own merit!

Always have a clear goal in mind and stick to the plan.

Use accurate facts when referring to your issue and provide specific examples.

Always have an “ask” and make sure your “ask” is clear.

Always thank people for their time.

Ask for a business card with contact information and be sure to follow up!

Have fun and always remind yourself why you are advocating. Your voice is important!

* Visit: www.govtrack.us/congress/members

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EFFECTIVELY COMMUNICATING WITH ELECTED OFFICIALS

Start with your personal story and, if in a group setting, divide up the content as to who will deliver what messages.

Always provide an example of “why this is important” to your audience.

Speak honestly and passionately.

Remember that the staff in a legislative office

Develop relationships with your legislative office and staff.

Get to the point and stay on message.

informs and educates the

legislators about important issues. The staff in an office are very important people!

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NOTES

48

NOTES

49

ENGAGING WITH REGULATORS

+

REGULATE

+

LEGISLATE

=

SUCCESS

ADVOCATE

52

INTRODUCTION

In previous sections, you learned the ways you can advocate throughout the legislative process. Following the legislative process, the regulatory, or implementation, process begins. Where the law is vague, regulations must be specific, and it is the role of federal and state agencies to determine how that law is implemented. In this guide, you will learn about the similarities and differences between legislative advocacy and regulatory advocacy, and why both are critical to your success. You will learn the basics of regulatory advocacy, its complexities and how you and your organization can make an impact on the regulatory process.

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