You might think that policy only deals with state and federal legislation; but it is much more than that! “Policy” also refers to:

  • regulatory actions
  • public agency practices
  • court decisions and rules
  • private institutional governance
  • formal policy positions of educational, religious, civic, or professional organizations.

Policy change may deal with forming new policy, improving practices, or assuring accountability. Policy decisions happen at every level, from local and state to national.  This section provides information to you about state and federal health and pain policy outreach. If this is an area of interest, you might also find useful information in the Access to Pain Care section.

Have you ever thought, “There ought to be a law protecting my right to pain care”? Or wondered why your health care provider said his hands were tied when it came to your prescription medication? Have you ever found that the medicine you were prescribed by your health care provider was not the same one you received at the pharmacy, or that your pharmacy refuses to fill your prescription? You have the power to influence how laws and policies are formed surrounding pain care. While it might seem intimidating at first, taking action can be a simple e-mail or phone call to an elected official voicing your opinion. Policies that elected officials and regulators develop go hand in hand with issues related to access to pain care.

Allies Against Pain is a grassroots advocacy network of the National Fibromyalgia & Chronic Pain Association.  Click here to find out how to join!

White House Petition for National Pain Strategy

Basics of Legislative Advocacy

The House of Representatives and the Senate are the two houses that comprise the United States Congress.  The House of Representatives has 435 members, and the Senate has 100 members. During an election, all Congressional members are voted in by the citizens they represent. Both of these houses meet in the Capitol Building in Washington, D.C.

Each state elects two senators to the Senate and at least one representative to the House of Representatives. Depending on the population of the state, more than one representative may be elected.

Most of the writing and work that these two houses do is delegated to different committees, or groups of legislators who are divided into specialized areas. After a committee receives a project assignment, they are responsible for the research and work, and then report back to the main body. The two houses utilize a library and a significant number of various staff members to assist them in their day-to-day activities.


Preparation is key in leading an effective policy effort.

  • Become informed. The first step in working to change policy is becoming informed and knowledgeable about the legislative issues that affect patients, families, and health care providers. Keep up-to-date on current events that might affect pain care. Become engaged with professional and consumer pain advocacy organizations to stay current with the latest pain policy and position of the pain community. Particularly in Washington, social media channels like Twitter are important tools for getting up to speed, determining what is hot in a particular area, or determining a Member’s position on a topic. Many pain advocacy organizations have active Twitter feeds that you can sign up to follow. As with all forms of pain advocacy, don’t re-create the wheel! If there is a “hot” issue in your area, consider reaching out to pain organizations to volunteer your support on the ground.
  • Policy leaders can be either elected officials or regulators who are appointed. If you are interested in targeting your efforts toward an elected official, know and define your legislator’s “constituency” – those they serve. Public officials want to gauge the number of voters in their district who care about or are affected by your issues. Thus, it is important to gather information about the number of voters in the official’s district who support your advocacy work, such as the number of people with unmanaged pain (this is in addition to the scope of the national problem). Look to state pain alliances or national pain advocacy organizations for these estimates.
  • Demonstrate your commitment to the pain management cause. It’s one thing to tell a legislator that there are so many people needlessly suffering from pain in his or her district. Showing that you were able to register the votes of the large number of them who agree with your proposed plan is quite another. Activities such as volunteering for a local campaign, participating in a fundraising event, hosting a “meet-and-greet” for a local legislator, and conducting a voter registration campaign are important ways to show that you mean business!
  • Know your contacts. Use research tools on the Internet through websites such as the Library of Congress and the League of Women Voters www.lwv.org, to quickly identify members of the U.S. Senate and House of Representatives. You can also look up contact information for local and state elected officials online. Visit their websites to learn more about their political agenda and other interests. Consider the pain connection if they have been recognized for championing certain causes that are associated with pain, such as cancer, diabetes or arthritis.

Ten Tips for Writing a Letter, Fax, or E-mail to Legislators

Writing to Members of Congress is one of the easiest and most effective ways for people to communicate with policymakers on issues of interest and priority. Written communication can be done by e-mail or by sending a letter to the congressional office by fax. You can usually find preferred contact information on an elected official’s website. These notes, if done correctly, can result in support for your policy priorities.

When writing to policymakers, be sure to use your personal e-mail account, as your employer might not share your views on the topic. More importantly, it may be illegal for you to represent them based on their lobbying status. It is usually best to submit comments as a constituent of the elected official, as opposed to an organizational representative. Be sure to include your full name, return mailing address, e-mail address, and phone number. If you are a federal or state employee, you must use personal e-mail and your personal computer, fax, etc.

Keep a hard copy of what you send, as sometimes notes are lost and you may need to send a second copy to ensure a response. Here are some additional tips:

  1. Always be polite. When addressing correspondence to any government official, be sure to use the proper forms of address. Even if you are angry, frustrated, or disappointed, be sure to use a polite tone and appropriate language; don’t be threatening, confrontational, or rude. The most effective way to communicate with your elected officials is the way you communicate with your colleagues, neighbors, patients, family, and friends – clearly, concisely, and with respect and honesty.
  2. Identify yourself and why you are writing. Make your request up front, and identify yourself as a registered voter, constituent, and someone who has a connection to pain. For example: “As a person with pain who lives, votes, and works in your district, I am writing to request your support for increased funding for pain research.” If you know the member or staff aide, say so at the beginning of your message; this may alert the aide reading your correspondence to give your message special attention. If you are in a leadership position and have clearance to write in that capacity (e.g., professional organization chapter president or state volunteer advocacy leader) be sure to use your title and indicate how many people you are representing for your organization.
  3. Be concise and informed. Try to keep your letter to a single page. You do not need to be an expert on the issue, but you should be familiar with the basic facts and points (e.g., name of the legislation and the associated bill number and why it should be supported or opposed). If you are requesting that the policymaker co-sponsor a particular measure or are writing to express disappointment about a particular vote the policymaker cast, check the list of co-sponsors and the vote record first to ensure that you have the most up-to-date information, and that all of your facts are correct.
  4. Personalize your message. You are an expert in your personal pain story – and as such, you have many experiences to share. Tell your own story or one of a patient’s (being mindful not to use anyone’s real name because of privacy concerns) and explain its relevance to the issue at hand. Although form letters and postcards are “counted,” they often do not get a response from a congressional office. Personal and local stories are more easily remembered by policymakers and their staff than statistics and generic examples. Moreover, personal stories often are what spur policymakers to action – not statistics. The reality is that our policymakers often legislate by anecdote. Your own words are best and can influence the legislator’s response or vote. If you are using a template letter, please take a few moments to personalize it with your own experience. Also, if you can, include relevant state or local information to explain how the issue affects your community.
  5. Be honest and accurate. If you are including statistics or other scientific information, be sure to verify your sources and have them handy if the congressional office wants additional information. Also, be sure not to exaggerate the situation or issue you are discussing; do not oversell the policy solution you are advocating or exaggerate the consequences if the policymaker does not do what you request.
  6. Be modest in your request. Be sure not to “kitchen-sink” your communication. Focus on only one or two issues of top priority. Your communication will be clearer and policymakers or staffers will be more receptive because you have not overwhelmed them with too many requests.
  7. Offer assistance and serve as a resource. Policymakers and their staffers are overworked and overwhelmed, so offer your assistance. They will appreciate your input and help. If you have an article of interest, be sure to include it with your letter, or refer to it and indicate that you would be happy to provide it should they be interested.
  8. Express appreciation. If you receive a letter informing you that the member shares your views or took the action you requested, write back expressing your thanks for the response and support. Or, if you learn that the policymaker recently co-sponsored a bill you support or voted the way you hoped, send a letter expressing your pleasure at their action. At the close of your correspondence, be sure to acknowledge and thank the member for his or her attention to your concerns.
  9. Ask for a response. Because policymakers and their staffers work for you, you have every right to (politely) ask for a response and hold them accountable if your communication goes unanswered. In fact, entire systems, processes, and staff exist in congressional offices to respond to constituent input. However, because of the volume of voter input, it could be weeks or months before you receive a response. Be clear in your correspondence that you are requesting a written response regarding the policymaker’s views on the issue or legislation you addressed.
  10. Make sure to follow up. If you do not receive a response in a timely fashion (a month for most offices, a bit longer for large states like California and Texas), be sure to follow up with the office by phone or with another letter with your original attached (make sure you keep or print a copy for your records before you send it off), and indicate you have not received a response and would like one. Follow up with a phone call to ensure that your letter or e-mail has been received. If you don’t receive the response you would like, write or call again to express appreciation for the response and be polite, yet firm, in communicating that it was not what you anticipated or requested. Reiterate your points and address any concerns or points the policymaker has made on the issue in the correspondence. Also, if a Member of Congress does not take an action on your request, it is your right to (politely) request the office to provide an explanation.

Other Tips for Reaching Out

Keep in touch with the offices of your state and federal legislators to establish a relationship and make yourself available as a local resource on pain management issues. There are times when you and an elected official will have to “agree to disagree,” but over time, you also may find that the policymaker may be supportive and helpful on other matters. Some of the best friends of the pain community were not always allies, but because of a combination of advocates’ tenacity, a history of being respectful, providing reliable information, and making a compelling case, they became one.

Specific Tips About “Snail Mail”

As a result of anthrax attacks in fall 2001, the U.S. Postal Service mail is handled differently by Congress. Most incoming mail is irradiated to ensure it is safe for handling. This process takes quite a while and often damages the contents. Therefore, for time-sensitive communication, sending written correspondence by e-mail or fax is advised – or make a quick phone call. Also, enclosing items such as photographs, originals of articles, or other documents is not recommended; save these items for hand delivery when you have a meeting in the office – either in the local office or in Washington, DC.

Specific Tips About E-mail

Most public officials have a public e-mail address that is available on their websites. Many legislators’ offices provide a generic, automatic acknowledgement that your e-mail has been received but then will follow up with either a specific e-mail response to your issue or a letter via the regular U.S. Postal Service. A handful of offices still do not respond individually to e-mail but count the input and inform the policymaker how many people have written about the particular topic and what position they are advocating.

Some offices have instituted computer-based “algorithms” to ensure that e-mail messages they receive are from legitimate constituents. Typically, all this entails is for the constituent to answer an easy math equation (e.g., what is two plus two?), or to copy a word or phrase from one place on the screen to another. This helps them weed out any computer-generated or “spam” messages and allows constituent communications to get through. It is best to contact your elected official’s office directly to learn about their individual policies about constituent correspondence, or check their website for guidance.

Specific Tips About Phone Contact
For Members of Congress, you can call the Capitol Switchboard at (202) 224-3121 to be transferred to your Members’ offices, or look in the “blue pages” of your local phone book, and your Members of Congress should be listed under the Government section.

Ten Tips for Meeting with Legislators and Their Staff

Meetings with elected officials and/or their staffs are terrific ways for you to communicate with policymakers on issues of interest and priority. Such meetings can be conducted at Congressional offices in Washington, DC, or “at-home” in district offices. If done correctly, they can result in garnering support for your public policy priorities. Visiting enables you to educate them about your concerns, offer yourself as a resource, and establish a relationship that can prove mutually beneficial over time. It is best to build a relationship before you need it.

If you are meeting with a federal representative, prior to arriving in Washington, DC, or at the district office, be sure to contact the office and schedule a meeting with the official or key staffer through the appointment secretary/scheduler. Be clear about who will attend and what issue(s) will be discussed. The day before, confirm the appointment as their schedule changes very often, and such changes often are beyond the staff’s control.

In advance of the meeting, be sure to put together some “leave-behind” materials that you will provide to the Member/staffer at the end of your discussion. For example, spend some time on the “Take Action” or “Advocacy” sections of consumer pain organizations such as the State Pain Policy Action NetworkU.S. Pain Foundation or the American Cancer Society Cancer Action Network to familiarize yourself with the pain community’s health policy agenda. You can also reach out to these organizations directly to let them know what you are planning! They may have other useful material for the leave-behind packet that you are putting together.

  1. Prepare and be on time. Elected officials and their staff are very busy and often have to be in more than one place at a time. Be respectful of their time by giving yourself plenty of time to go through security, find your way to the office, and announce yourself to the receptionist. If you will be attending in a group, discuss with your colleagues in advance what you will be covering in the meeting. Be sure to select a primary spokesperson and determine who in the group will raise which points and requests. You should be clear about your roles and who will cover the different topics in the meeting. Open by thanking the Member/staffer for his or her time. Be sure that everyone in the group identifies herself/himself – first and last name and connection to pain – and remember to mention that you are a voting constituent and provide some context about where you live/work in the district/state. If the Member/staffer has been helpful in the past or has taken action that you appreciate, be sure to say thank you up front. Prior to your meeting, get a sense of what current issues are pending before the Congress, and the committee(s) on which the Member sits. Also, if you are advocating for new legislation, be prepared to answer questions about funding and resource allocation.
  2. Be brief and clear, as you typically will have only 10–25 minutes for the entire meeting. Cover only a few (no more than three) topics. Prepare talking points beforehand to ensure that you and your colleagues “stay on message.” Anticipate the kinds of questions you may be asked from both supporters and opponents. Do your best to be prepared to answer such questions in the meeting. If you do not know the answer, acknowledge that, and indicate that you will follow-up later (and remember to do so). Do not assume that the Member/staffer is very knowledgeable about the issue you are discussing – be sure to provide them with some background. Avoid the use of acronyms – do not assume that your legislator is aware of pain-specific terminology or jargon. If you are not discussing a specific piece of legislation, explain that you want to provide background information or provide your perspective on an issue of importance to you and your community.
  3. Provide a personal story or real-life illustration of the problem, as personal stories are more easily remembered and more compelling than statistics. As necessary, briefly cite evidence or statistics to support your position, particularly any local, regional, or state data. However, be sure not to overwhelm the policymaker or staffer with too many statistics or references to studies (this kind of information can be in the materials you leave behind or can be sent with your thank-you note). Discuss how the policy change will have an impact on your community. Be concise and honest about the issue and the proposed solution, and make clear the relevance of the issue to their constituents.
  4. Be polite and listen carefully to the policymakers’ or staffers’ views and comments. Even if you disagree, it is important to be courteous. Be flexible and consider the opposing view. Do not to be argumentative or threatening. You may agree to disagree on an issue today and find that you can agree and work together on another matter tomorrow. Much of health policy advocacy is about building and maintaining relationships.
  5. Make sure to get a response – in a nice way. Ask directly, and politely, for the policymaker’s views and position on the issue. Do not let the policymaker or staffer distract you with other issues (gently steer the conversation back to your issue), avoid responding, or dismiss your specific concerns with a broad statement such as, “I am working to improve pain care by supporting more funding for pain research.” Stay on message and the topic as politely as possible. It is your constitutional right to “petition Congress for redress of grievances” – so take this opportunity to do what you can to get a commitment from the Member to take action on your request. However, if the Member truly is undecided or the staffer is not familiar with the Member’s position on the issue, do not force a response – reiterate your interest in knowing the Member’s position, offer to answer any additional questions or provide additional information, and request a follow-up letter once a decision has been made on your request.
  6. Bring a concise set of materials with you to leave behind. Hand over the materials at the close of the meeting, so that the Member/staffer doesn’t start reading the material and only listen to you with one ear. Early in the meeting indicate that you have materials to leave on the topic. Be sure to follow up and follow through on any promises of additional information.
  7. Leave your contact information. If you leave a business card, make it clear that you are visiting on your own time and not representing your employer unless you have received clearance. Be sure to get a business card from the Member/staffer so that you know how to reach them. Be sure to ask the Member/staffer their preferred mode of communication (e.g. e-mail, faxes, voicemail/phone).
  8. Summarize your requests of the Member/office and any responses the Member/staffer have given to ensure you are clear on where they stand on the issues. Summarize the Member’s/staffer’s requests and indicate how you plan to respond. Express thanks and appreciation for their time, interest, and courtesy. Ask politely for a good day in the next week to 10 days for you to follow up on your request(s).
  9. Report back to your advocacy partners involved in the issue or effort so others can follow up with the office with additional information and reinforce the message(s) you delivered.
  10. Follow up with a thank you note to the Member/staffer referencing the date of your meeting, who was in attendance, and the issues you discussed. Your follow-up letter should express appreciation for the time and consideration extended to you during your meeting, reiterate your request(s), and ask for a written response from the office. Be sure to respond with answers or information the Member/staffer requested. Be sure to keep in touch with the Member/staffer to maintain and strengthen the relationship and make yourself available as a local resource on pain issues. There are times when you and an elected official will have to “agree to disagree” but over time, you also may find that the policymaker may be supportive and helpful on other matters.

Other Tips for Meetings

When visiting Capitol Hill or a federal building, you could encounter long lines to get through security (bags and all contents from your pockets must be put through the X-ray machines and you must step through a metal detector). Allow yourself plenty of time to get to your meeting.

If your initial meeting is in Washington, DC, schedule a similar meeting with the staff in the district or state office and check in with your policymaker when s/he is at home visiting to reinforce the relationship and follow up on your issues of priority.

The Congressional schedule is fluid and Members and staffers often are pulled away for various events and activities that are not known in advance (e.g., last minute press conference, meeting with the Chairman of a committee the Member sits on, etc.), and your meeting could be delayed or bumped. The Member may not be available, and you instead may meet with staff. Do not discount the influence and weight that staff carries – they are often the leaders on an issue. Also, space on Capitol Hill is at a premium, so your meeting could occur in the reception area in the office, in the hallway, or downstairs in the coffee shop. Do not take any last minute meeting changes personally, and make sure you are always gracious and flexible.

If you have arranged for a member of Congress to attend your event, inform your colleagues and make all the appropriate logistical arrangements. Be sure to have someone present who can take pictures, and make certain to give copies of the photos to the Member and his/her staff.

 

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Challenge #6

Write a letter, fax, or e-mail to a Member of Congressr or other policymaker concerning chronic pain using these tips.

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