Prior to reaching out to your legislative contacts, it is important for you to organize your thoughts into a pain management agenda. For legislative outreach, think about targeting both your state and federal elected officials, as well as regulatory officials, who are often responsible for developing health policy.

• Define the problem. When you describe the public health crisis in terms of access to care for people with pain, be sure to bring it down to terms to which the official can easily relate. In addition to tallying the number of pain sufferers, let your officials know how many people are forced to remain on public assistance programs and how many children and spouses are affected when pain sufferers are unable to work or to provide care for loved ones. This “human cost” of inadequate pain management is important for officials to know. In addition to the numbers, convey what pain has cost you or your loved one in terms of lost time with family, work opportunities and relationships. Be specific about what you would like to see accomplished.

• Offer reasonable solutions. Explain what can be done to solve this public health problem in your town, district, or state. Offer realistic alternatives and be upfront about their relative pros and cons.

• Suggest how the official and the official’s agency can help. When possible, cite relevant precedents in which the official or agency has already taken similar action and been effective for others. But, above all, be specific and concise in describing what your advocacy is asking the official to help accomplish (such as co-sponsorship of a bill, or a change in state health policy).

• Maximize your results via frequent follow-up. After investing your time in making the effort to contact, educate, and inform public officials, it is critical that you maximize the likelihood of results by following up with calls and reminder messages. Public officials and their staffers are deluged with requests, and they are going to give priority to those requests that affect the most constituents and those requesters who are the most persistent.

• Provide resources and background data to the elected official and/or their staffer. Compile local figures on the prevalence of pain in your state, county and elected official’s city or district. Population data can be found at the U.S. Census Bureau’s website. District voter populations can be found through your local board of elections. Leave a packet behind that includes sample language for the policy change or bill that you would like them to sponsor, fact sheets and your contact information. You can also include a personal letter (one page) that succinctly tells your personal pain story, letters from fellow constituents that support the policy change who were not able to attend the meeting, as well as photographs to accompany the personal letters. This is a powerful way to remind elected officials that pain affects real people – including voters – every day.

Advocacy in Action: Journey of the National Pain Care Policy Act

On July 11, 2007, Representatives Lois Capps (D-CA) and Mike Rogers (R-MI) introduced the National Pain Care Policy Act (H.R. 2994). This bill passed Congress on March 30, 2009. It was then introduced to the Senate as the National Pain Care Policy Act of 2009 (S. 660) by Senator Orrin Hatch (R-UT) and Christopher Dodd (D-CT). The successful passage of the bill in Congress was the result of countless advocates contacting their Representatives through phone calls, letters and e-mails, as well as personal visits. More than 100 consumer and professional organizations signed a consensus statement in support of this legislation and forwarded information to their membership.

In the summer of 2009, key elements of the National Pain Care Policy Act were incorporated into the Patient Protection and Affordable Healthcare Act, which President Barack Obama signed into law on March 23, 2010. These provisions include:

• Mandating an Institute of Medicine conference on pain to address key medical and policy issues affecting the delivery of quality pain care. This has been completed (IOM). Click here to access the IOM report.

• Establishing a training program to improve the skills of health care professionals to assess and treat pain.

• Enhancing the pain research agenda for the National Institutes of Health (NIH).

Advocacy organizations are now working with appropriations committee members to ensure that this portion of the law is adequately funded. Check with pain-related organizations for the latest updates and ways that you can support their efforts. See Resources at the end of this section.

Information about health care reform in general can be found at the Kaiser Family Foundation’s website: http://healthreform.kff.org.

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Preparation is key in leading an effective policy effort.

• Become informed. The first step in working toward policy change 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. 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. Public officials want to gauge the number of voters in their district who 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).

• Demonstrate your commitment to the pain management cause. It is 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 platform 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. Utilize research tools on the Internet through websites such as http://thomas.loc.gov — named for the inventive spirit of Thomas Jefferson — 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.

Ten Tips for Writing a Letter, Fax, or E-mailiAdapted from: Oncology Nursing Society. Health Policy Toolkit. Chapter 10: Top Ten Tips for Writing a Letter, Fax, or E-mail, page 24. http://ons.org/LAC/media/ons/docs/LAC/pdf/HPTK/hpt
k07.pdf. Accessed May 24, 2012.

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. Such written correspondence, if done correctly, can result in garnering support for your public 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. Not only does your employer not necessarily represent your views, 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. For all forms of communication, 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.

Be sure to keep a hard copy of what you send, as sometimes faxes, e-mails, or letters are lost and you may need to send a second copy to ensure a response. When writing your letter, keep the following tips in mind:

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; be sure not to be threatening, confrontational, or rude. The most effective way to communicate with your Members of Congress 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. In the opening sentence, make your request up front, and identify yourself as a registered voter, constituent, and someone who has a tie 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 the National Pain Care Policy provisions of the health care reform law.” 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. To the degree possible, 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 at a particular vote the policymaker cast, check the list of co-sponsors and the vote record first at http://thomas.loc.gov to ensure that you have the most up-to-date information, and all of your facts are correct.

4. Personalize your message. Remember, 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 the relevance to the issue at-hand. Although form letters and postcards are “counted,” they often do not elicit a response from a congressional office. Personal stories and illustrations of local impact 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. Although you may wish to address multiple issues, be sure not to “kitchen-sink” your communication. It is best to 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 correspondence, or refer to it and indicate that you would be happy to provide it should they be interested.

8. Express appreciation. Too many times we just “spank” and forget to “thank.” 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 his/her 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. It is important to note, however, that because of the volume of constituent input, it could be weeks or months before you may 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 receive an unsatisfactory response to your correspondence, write or call again to express appreciation for the response and be polite, yet firm, in communicating that the response 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 Written Communications

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; it is best to 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 elected 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.

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 Your State and Federal Legislators and Their Staffii Adapted from: Oncology Nursing Society. Health Policy Toolkit. Chapter 12, “Top Ten Tips for Meeting with Members of Congress and their Staffers”, page 30. http://www.ons.org/LAC/media/ons/docs/LAC/pdf/HPTK
/hptk07.pdf. Accessed May 24, 2012. 

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 and if done correctly, can result in garnering support for your public policy priorities. Visiting with them enables you to educate them about your concerns, offer yourselves 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 American Chronic Pain Association 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!

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 with the Member/staffer, it is best to get a sense of what current issues are pending before the Congress, and the committee(s) on which the Member sits. For recommended resources for this type of information visit thomas.loc.gov. 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 (one to three) topics. It is best to 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. Some of the best friends of the pain community were not always allies but became supporters over time.

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/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. However, do not hand over the materials until the close of the meeting, or the Member/staffer may choose to 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 such 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). Be sure to allow yourself plenty of time to get through security.

If your initial meeting is in Washington, DC, be sure to 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 very 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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As a person with pain, caregiver or health care provider, you are an important stakeholder in helping to shape regulatory policy. As policies are developed, regulators need to hear your voice, your story and your opinion.

What is Regulatory Advocacy?

Regulatory advocacy is similar to other forms of advocacy in that you present your story, key messages (click here for an example of key messages), and point of view to key decision makers, often through oral or written testimony. From a health care perspective, federal regulators help to shape the environment that makes a variety of therapies available. On a statewide level, regulators form policy that can affect what is covered by organizations including State Workers’ Compensation and Pharmacy Benefit Managers.

There are many formal statements of policy or good practices that fall short of the status of legislation or regulation. Many states have, through their medical boards, adopted pain policies, generally with a view to advising physicians as to the appropriateness of prescribing controlled substances; failure to follow such policies may result in disciplinary action. In some cases, regulatory bodies control reimbursement for procedures to treat pain, medical devices, physical and psychological therapies as well as complementary and alternative modalities. Health care provider institutions are also subject to accreditation standards which, while lacking direct legislative force, can impact common law malpractice standards in a similar manner to Clinical Practice Guidelines and often are incorporated by reference by other regulatory systems.

These regulatory decisions often have a direct relationship with access to pain care because they set the tone for prescribing practices – in some cases with little or no input from people with pain and their caregivers.

What Do Regulators Do?

Regulatory bodies govern various industries, develop guidance, and have the power to impose restrictions and fines if regulations are not met. They are usually government agencies. In the United States, the federal regulatory body that oversees the drug and medical device industry is the U.S. Food and Drug Administration (FDA). The FDA is a division of the Department of Health and Human Services.

The FDA is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to advance innovations that make medicines and foods more effective, safer, and more affordable and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.

From a medication standpoint, FDA regulates new drug approvals, product labeling for both prescription and over-the-counter (OTC) drugs and the manufacturing process.

Because of its role in regulating controlled substances, including ingredients in pain medication, the Drug Enforcement Agency (DEA) is also influential in shaping federal pain policy and regulations that affect people with pain.

More information about federal regulation can be found at here at www.regulations.gov. Keep in mind that regulations are often made on a state level, and, while the rules vary from state to state, the advocacy process is similar.

How Can Regulatory Bodies Affect Pain Care?

In 2007, the Food and Drug Administration Amendments Act (FDAAA) became a law. This law includes many components, one of which enhances the FDA’s authority surrounding post-market safety of medications. As a part of this charge, the FDA is working with industry and consumer stakeholders to develop Risk Evaluation and Mitigation Strategies (REMS) for certain classes of medications. Several leading pain advocacy and professional organizations have developed position statements surrounding REMS. For more information, visit:

• American Academy of Family Physicians

• American Academy of Pain Medicine

• American Medical Association

• American Pharmacists Association

• Interstitial Cystitis Association

• U.S. Food and Drug Administration

Pain policy expert, Aaron Gilson, MS, MSSW, PhD, Senior Scientist, Paul P. Carbone Comprehensive Cancer Center, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, explains how regulatory bodies can affect pain care through the following Pain EDU interview. Click here to view.

On a statewide level, regulators can develop policies or guidelines that can affect access to pain care. Some states, for example, have created policies through their Workers’ Compensation division that places limits on pain medication. In other states, the Medical or Pharmacy board will create or adopt guidance for their members in terms of what they may consider to be appropriate levels of care.

How Can I Advocate for Better Pain Care in a Regulatory Setting?

Networking is key to finding out what pain-related policies may be on the table in your state. Contact national professional and patient advocacy organizations to determine if there are any policies in development that impact people with pain. They may also have sections on their websites that address state advocacy.

If regulatory boards are having a hearing, a notice should be published in the state or federal register. You can contact the regulatory board to find out what is on the agenda and determine if the meeting is open or closed (they’re more likely to be open earlier on in the process). If a meeting is open, the boards need to make an effort to inform the public that they have a forum to express their views and concerns.

Addressing a medical board may be intimidating at first; these groups have tremendous power. But so do you in bringing concerns to the table! The right person with the right message really can make a difference. More information about state professional licensing boards can be found in the “Health Care Professional Advocacy” section of this toolkit.

Sample Tools for Regulatory Advocacy

Regulations.gov is an online resource that can help you track and provide comment on proposed regulations to pain medication and devices. This site allows you to search for information through a key word or docket number, view comments from other individuals and third-party groups and submit your own comments. You can even sign up for e-mails to track updates on regulations by docket number.

Some states have laws requiring that meetings by “public bodies,” such as legislative, executive, or advisory committees (including licensing boards), are public.

Ten Tips for Testifying at a Public Hearingiiihttp://www.cthealthpolicy.org/toolbox/legislative/
testify.htm. Accessed May 24, 2012.

Public hearings are held early in the session by legislative committees to collect public comment on bills they are considering. Hearings are listed in the Legislative Bulletin including date, time, hearing room at the Legislative Office Building, and the list of bills that will be considered at that hearing. Federal regulatory agencies such as the FDA and state boards also periodically conduct hearings that are open to public comment.

If you are tracking a bill or policy issue and want to testify about it:

1. Try to meet, call and/or write committee members before the hearing.

2. If possible, register in advance of the hearing. If this is not required, arrive early to sign up to speak. Find others who plan to testify on your bill or issue.

3. Each committee runs their hearings differently, but, in a legislative setting, the first hour (or more) of the hearing is usually reserved for public officials – other legislators, agency representatives, other elected officials. Then the committee chairs begin calling speakers from the public sign-up list, usually in the order you signed up. If you have a disability or a special need, talk to the committee staff in advance.

4. You will generally have only three to five minutes to speak, but do not rush. It is perfectly all right to speak for less than the allotted time, but do not go over. Rehearse your testimony out loud in advance to time it out. It is alright to read your testimony (versus trying to memorize it), since you may have limited time and want to ensure that you do not omit anything that is important. A soft bell may ring when your time is up. Finish your sentence and thank the committee.

5. Use your speaking time to summarize your key messages and refer the committee members to your written testimony for more detail. Speaking from your own experience is most persuasive.

6. Make your remarks unique. Try not to just repeat other speakers’ remarks.

7. Prepare potential answers. After your testimony, committee members may have questions for you. Answer briefly and accurately. If you don’t know an answer, say so and tell them that you will get back to them.

8. Be polite and respectful. There will often be opposing views presented at a public hearing. Do not disparage anyone who testifies against your position. Point out the differences, answer any concerns, but do not get personal in your response.

9. Prepare written copies. The Legislative Bulletin or hearing organizers will note how many copies you need to submit to the Committee staff before you speak. Bring extras to share with other advocates and with legislators as you see them in the hall. It is also beneficial to have a written copy of your testimony to submit in writing to the committee for the records.

10. Follow up. Write a thank you letter to the committee, include your testimony again and any updates or answers to their questions.

Testifying is often not a pleasant experience. You may arrive very early in the morning, only to find that you are far down the list of speakers. (In recent years, professional lobbyists and advocates have been arriving at the Legislative Office Building at 4:00 am to sign up.) You may not speak until late afternoon or later. You may find that only two or three legislators are still at the hearing and the rest of the public has left.

But there are instances where a bill did not pass out of committee because no one showed up to testify in favor of it.

Sample Pain Management Testimony

Several examples of written or oral testimony can be found on the websites below:

• American Academy of Pain Management

• American Academy of Pain Medicine

• American Pharmacists Association

Consumer and professional organizations often notify their members about opportunities to submit oral or written testimony through e-mail action alerts or newsletters. If you are interested in advocating in this way, be sure to join pain-related organizations and sign up to receive these alerts! Take care to follow instructions surrounding testimony submission, including deadlines, contact information and docket numbers.

You can find more samples of written testimony through Regulations.gov, an online resource for nearly 300 government agencies, including the FDA. This site allows you to search for information about a proposed regulation through a key word or docket number, view comments from other individuals and third-party groups and submit your own comments. You can even sign up for e-mails to track updates on regulations by docket number.

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State Pain Policy & Legislative Advocacy

Many of the same rules apply when contacting your state policymakers as with federal officials. In some cases, laws, rules and regulations that may affect you and your pain care the most occur on a state level. Consider the following ways to advocate on a state level, in addition to your federal policy advocacy efforts.

The University of Wisconsin Pain & Policy Studies Group – State Report Cards

The Pain & Policy Studies Group, which operates out of the University of Wisconsin, conducts ongoing research into federal and state pain policy and periodically issues research reports surrounding their findings.

The policy reports were created to improve the quality and consistency of U.S. federal and state policy affecting patients’ pain care. Pain can result from any number of chronic diseases or conditions such as cancer, HIV/AIDS, sickle cell anemia, and fibromyalgia. The Progress Report Card and companion Evaluation Guide provide a framework for deciding which policies to remove and recommend language that can be added to current policy which encourages proper pain relief. The reports provide tools that policymakers, health care professionals, and advocates can use to improve the pain policies in their state.

In 2000, the Pain & Policy Studies Group (PPSG) designed a policy research project and published findings from the first-ever evaluation of federal and state pain policies, entitled Achieving Balance: A Guide to Evaluation of Federal and State Policies (Evaluation Guide 2000).

The PPSG is expected to release an updated report in 2013, so please continue to check their website for updates: www.painpolicy.wisc.edu.

Why Evaluate Pain Policies?

Federal and state policies govern health care practice, including pain management. These policies establish parameters for patient care decisions affecting pain management, palliative care, and end-of-life care. So the level of comfort that medical professionals may have about treating pain can be influenced by what their state policies say about this practice. Many states have policies that create barriers to patients getting their pain treated adequately, or are silent about recognizing pain relief as part of quality health care practice; it is these types of policies that advocates are trying to improve. Good pain policies reassure practitioners that pain management is an accepted part of patient care.

Does a Good Grade Mean that Practitioners in the State Provide Adequate Pain Control?

Not necessarily. Improving policies that govern health care practice is a critical first step, but policy change alone is not enough to ensure patient access to pain treatment. Good policies must be communicated and put into practice through advocacy and education. The goal is for the regulatory boards (medical, osteopathic, pharmacy, nursing) to make licensees understand that state policy promotes pain management, and that health care professionals who responsibly treat pain should not fear their regulatory agency.

Why is it Important to Improve State Pain Policies?

Improving state policy is a necessary complement to the many ongoing state-level initiatives designed to educate health care professionals about the appropriate use of pain medications and to inform the general public about the availability of pain treatment options. Most importantly, improving state policy will ideally remove barriers and enhance appropriate access to quality care.

State Licensing Boards

Federal regulatory bodies oversee industries while state bodies review and enact policies that affect their own states and address local issues. Some states follow federal guidelines, but this is not always the case, and is usually based on what is happening in their state.

The most common component of state regulations and regulatory bodies is that they are different in every state! Most states have the same types of agencies such as Boards of Pharmacy, Nursing, Medical, and Regulatory Authority. However, politics, ethical guidelines and regulations are different in each state.

Each of the 50 states, the District of Columbia, and the U.S. territories has a Medical Practice Act that defines the practice of medicine and delegates the authority to enforce the law to a state medical board: to protect the public from the unprofessional, improper, unlawful, fraudulent and/or incompetent practice of medicine.

State medical boards license physicians, investigate complaints, discipline those who violate the law, conduct physician evaluations and facilitate rehabilitation of physicians where appropriate. By following up on complaints, medical boards give the public a way to enforce basic standards of competence and ethical behavior in their physicians, and physicians a way to protect the integrity of their profession. State medical boards also adopt policies and guidelines related to the practice of medicine, including pain care.

As stated above, the structure and authority of medical boards vary from state to state. Some boards are independent and maintain all licensing and disciplinary powers, while others are part of a larger umbrella agency, such as a state department of health. State medical boards are typically made up of volunteer physicians and members of the public who are, in most cases, appointed by the governor and paid a nominal stipend for their service. The majority of state boards employ an administrative staff including an executive officer, attorneys, investigators and licensing staff. The state legislature determines the financial resources of most boards. Some boards are funded directly from physician licensing and registration fees.

Each state also has its own nursing, physician assistant, pharmacy and social worker licensing board that operates in much of the same way as medical boards. Regulations among chiropractic and acupuncturists also vary by state. Regulatory concerns among health care providers can be a major barrier to effective pain care. Key decision makers can benefit from seeing the “human” ramifications of their policies.

Securing & Leveraging State Governors’ Proclamations for September as Pain Awareness Month

Obtaining a proclamation from the governor of each state or mayors of major cities to declare September as Pain Awareness Month is a great way to help raise pain to the top of the health care agenda in your area. In 2001, the American Chronic Pain Association began efforts, which were later embraced by Partners for Understanding Pain, to formally declare September as Pain Awareness Month. Since then, September has become widely acknowledged as a month to recognize the importance of proper pain management and the rights of people in pain.

Partners for Understanding Pain (PUP) is a consortium of many organizations, each with its special knowledge and perspective, but all committed to bringing pain issues into sharper public focus. PUP’s hope and mandate is to raise awareness about the sources of pain and the many resources now available to people who suffer. To help increase involvement and awareness, PUP is encouraging every pain management advocate to have their state governor declare September as Pain Awareness Month.

Leveraging your Proclamations

The steps taken to secure a state or local proclamation offer an opportunity to educate government officials about state pain issues. The proclamation and state health observance can be further leveraged by:

• Utilizing September Pain Awareness Month as a central theme in developing community outreach programs at local hospitals, community centers or places of worship

• Conducting a rally to raise awareness of the need for improved state pain policy

• Planning a “Hill Day” to your state capital or to Washington, DC to meet with your Senators or Congressmen

• Sending press releases about any of the above activities and the health observance to local media, together with an interview opportunity for a local person with pain

PUP’s suggestions for securing state and local proclamations include:

Step 1.  Identify Your Goal and Purpose
Example: The goal is to obtain a Governor’s Proclamation declaring September as your state’s Pain Awareness Month. The purpose is to increase awareness surrounding the undertreatment of pain in your state, to activate individuals to work toward reducing barriers and increasing access to appropriate pain management.

Step 2.  Gather Supporting Materials
Identify and gather all the current supporting materials on the subject. These will form the foundation on which you are making your request. They need to include statistics that reveal the incidence of the problem with credible references.

A good source of information would be the American Chronic Pain Association at www.theacpa.org and the U.S. Pain Foundation at www.uspainfoundation.org. Use proclamations that were already successful as a template for your state’s proclamation. Any work that you can do for the governor’s office in the writing of the proclamation or providing suggested wording will be appreciated and speed the process along! It will also help to ensure that the finished product accurately reflects your purpose.

Step 3. Contact the Governor’s or Mayor’s Office
Once these materials are collected and prepared, call the governor’s office to determine which department is responsible for the writing and issuing of State Governor’s Proclamations. This department may vary by state, and may be listed as Public Relations, Press Office, Proclamation Office, etc. Determine the name of the contact person in charge of proclamations in that office.

Step 4. Request the Proclamation
Call the contact person and introduce yourself and verify that he/she is in charge of proclamations. Identify yourself and explain your mission and state your goal and purpose. Ask if they’d like you to make an appointment to visit with them and share your materials, or if they would prefer that you send them the materials in the mail for their review (use the quickest mailing method that you can afford so that the staff receives the materials soon after the phone call). Always call to ensure they have received the materials and are comfortable with going forward with the request. In some instances, proclamations can be secured over the phone, but if you detect some reluctance from them about issuing a proclamation, a face-to-face meeting to make your case can be very effective.

Step 5. Confirm Timeline
Be sure to find out how long they anticipate the process to take. It is suggested to allow a minimum of 2-3 months lead time. In some instances proclamations can be secured in less time, but it is always good to start early.

Step 6. Receipt of Proclamation
Request that the office send the finished proclamation directly to you as soon as it is finished. Be sure your contact information is included on all correspondence. Ask your contact if it is possible to arrange to pick up the proclamation in person (and, be sure to bring your camera – this is a great photo op!).

Step 7.  Follow Up and Provide Feedback
The governor’s or mayor’s office would appreciate information on how you intend to use the proclamation and then provide them with any pertinent feedback. An example of intended use for a proclamation may include raising awareness through media and community outreach about the undertreatment of pain, inadequate access to pain care and barriers to pain management. A follow-up memo office detailing any events or media coverage will only make your case stronger should you approach them next year.

For additional information, log on to: www.theacpa.org and select Partners for Understanding Pain, Information and Advocacy. Then select Proclamations Process Guide Toolkit.

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These are just a few of the common pitfalls identified by the Connecticut Health Policy Project.iv The Health Policy Project http://www.cthealthpolicy.org/toolbox/advocacy/cla
ssic_mistakes.htm Accessed May 29, 2012 

Recognizing them should help you avoid them.

• Learn the system first. Too many advocates don’t take the time to learn the history and culture of the system they want to influence. Their naiveté can doom a good idea and waste a lot of time. Too often, a group of advocates works for a couple of years to get a bill passed, only to find that it doesn’t get implemented because there was no money for it in the budget. So they work for another couple of years to get it funded. But it still isn’t implemented, because no one talked to the agency that was supposed to do it.

• They don’t have to “get religion;” they just have to vote yes. We all care deeply about our causes, but that doesn’t mean that everyone else will. A very wise Senator said this to me while I was lobbying one of her colleagues. I explained the issue and got his commitment to vote for it. But instead of saying thank you and leaving well enough alone, I kept pressing (for what I don’t know). Just let it be – they don’t have to become “converts,” they just have to vote yes.

• Close the deal. Too often, an advocate makes a case with a policymaker, who expresses complete agreement that, this is a serious problem, our state really needs to address this, etc. The advocate leaves feeling great, having made his or her point, but later learns that the policymaker didn’t support the proposal. It’s human nature to hear what you want to hear, but advocates need to listen carefully. If you want people to vote yes, ask for their vote specifically. If you want them to fund a program, ask for it specifically. Be polite, but endure the silence as you wait for their answer. Make no assumptions.

• Follow through. Programs are not done even when they are implemented – they have to be evaluated and adjusted accordingly to be sure they are solving the original problem. It is critical to keep up the pressure all through the process.

• Don’t take it personally. Policymakers have to balance a lot of very worthy competing interests. You won’t win every time. Be gracious, don’t burn bridges. Wait for the next opportunity. Another note, at the end of the legislative session and near committee deadlines, a great deal of pressure builds, tempers run high, things are said, and feelings get hurt. Don’t take it personally.

• Be patient. Calvin Coolidge said, “Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent.” Nothing happens overnight. Put your idea out there, and tend it.

• Monitor and wait for opportunities. Advocates must be flexible. If your proposal won’t work, for whatever reason, find another that does the same thing. Reasons can be political, financial, or just personal. Find a way around it. Get creative – repackage it or route it through a different agency.

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Agency for Health Care Research and Quality
540 Gaither Road, Suite 2000
Rockville, MD 20850
Phone: (301) 427-1104
www.ahcpr.gov/clinic

American Cancer Society
250 Williams Street, NW
Atlanta, GA 30303
Phone: (800) 227-2345
www.cancer.org

American Cancer Society Cancer Action Network
www.acscan.org

American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677
Phone: (800) 533-3231
Fax: (916) 632-3208
E-mail: acpa@pacbell.net
www.theacpa.org

American Nurses Association
8515 Georgia Avenue, Suite 400
Silver Spring, MD 20910-3492
Phone: (800) 274-4262
Phone: (301) 628-5000
Fax: (301) 628-5001
www.nursingworld.org

American Society for Pain Management Nursing
P.O. Box 15473
Lenexa, KS 66285-5473
Phone: (888) 34-ASPMN (27766)
Phone: (913) 895-4606
Fax: (913) 895-4652
E-mail: aspmn@goamp.com
www.aspmn.org

Campaign for Tobacco-free Kids
1400 Eye Street NW, Suite 1200
Washington, DC 20005
Phone: (202) 296-5469
Fax: (202) 296-5427
www.tobaccofreekids.org

Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30333
Phone: (808) 232-4636
E-mail: cdcinfo@cdc.gov
www.cdc.gov

Citizen Advocacy Center
182 N. York Road
Elmhurst, IL 60126
Phone: (630) 833-4080
E-mail: cac@citizenadvocacycenter.org
www.citizenadvocacycenter.org

Connecticut Health Policy Project
71 Orange Street
New Haven, CT 06510
Phone: (203) 562-1636
Fax: (203) 562-1637
E-mail: info@cthealthpolicy.org
www.cthealthpolicy.org

Democratic National Committee
430 S. Capitol Street, SE
Washington, DC 20003
Phone: (202) 863-8000
www.democrats.org

Federal Register
732 N. Capitol Street, NW
Washington, DC 20401
Phone: (886) 512-1800
Phone: (202) 512-1800
www.gpoaccess.gov

Federation of State Medical Boards of the United States, Inc.
400 Fuller Wiser Road, Suite 300
Euless, TX 76039
Phone: (817) 868-4000
Fax: (817) 868-4099
www.fsmb.org

Hospice and Palliative Nurses Association
One Penn Center West, Suite 229
Pittsburgh, PA 15276
Phone: (412) 787-9301
www.hpna.org

The Library of Congress
101 Independence Avenue, SE
Washington, DC 20540
Phone: (202) 707-5000
www.loc.gov

Kaiser Family Foundation
2400 Sand Hill Road
Menlo Park, CA 94025
Phone: (650) 854-9400
Fax: (650) 854-4800
www.kff.org

League of Women Voters
1730 M Street NW, Suite 1000
Washington, DC 20036-4508
Phone: (202) 429-1965
Fax: (202) 429-0854
www.lwv.org

National Association for Home Care & Hospice
228 7th Street, SE
Washington, DC 20003
Phone: (202) 547-7424
Fax: (202) 547-3540
www.nahc.org

National Cancer Institute
6116 Executive Boulevard, Suite 300
Bethesda, MD 20892
Phone: (800) 422-6237
www.cancer.gov

National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 770
Silver Springs, MD 20910
Phone: (888) 650-9127
Phone: (301) 650-9127
Fax: (301) 565-9670
E-mail: info@canceradvocacy.org
www.canceradvocacy.org

National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20892
Phone: (301) 496-4000
E-mail: NIHinfor@od.nih.gov
www.nih.gov

Oncology Nursing Society
125 Enterprise Drive
Pittsburgh, PA 15275
Phone: (866) 257-4667
Phone: (412) 859-6100
Fax: (877) 369-5497
Fax: (412) 859-6162
www.ons.org

Pain & Policy Studies Group
6152 Medical Sciences Center
1300 University Avenue
Madison, WI  53706
Phone: (608) 263-7662
Fax: (608) 263-0259
E-mail: ppsg@uwcarbone.wisc.edu
www.painpolicy.wisc.edu

Republican National Committee
310 First Street, SE
Washington, DC 20003
Phone: (202) 863-8500
Fax: (202) 863-8820
E-mail: info@gop.com
www.rnc.org

Rock the Vote
1001 Connecticut Avenue, NW
Suite 640
Washington, DC 20036
Phone: (202) 719-9910
www.rockthevote.org

Roll Call
77 K Street NE, 8th Floor
Washington, DC 20002-4681
Phone: (202) 650-6500
www.rollcall.com

Regulations.gov
www.regulations.gov

Thomas Legislative Information
101 Independence Avenue, SE
Washington, DC 20540
Phone: (202) 707-5000
http://thomas.loc.gov

U.S. Census Bureau
4600 Silver Hill Road
Washington, DC 20233
www.census.gov

U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201
Phone: (877) 696-6775
www.dhhs.gov

U.S. Drug Enforcement Administration
Office of Diversion Control
8701 Morrissette Drive
Springfield, VA 22152
Phone: (800) 882-9539
www.dea.gov

U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993
Phone: (888) INFO-FDA
Phone: (888) 463-6332
www.fda.gov

U.S. House of Representatives
Washington, DC 20515
Phone: (202) 224-3121
www.house.gov

U.S. Senate
Washington, DC 20510
Phone: (202) 224-3121
www.senate.gov

The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500
Phone: (202) 456-1414
Fax: (202) 456-2461
www.whitehouse.gov

Resources verified May 2012.

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Plan:

• Visit pain advocacy professional and consumer organizations to learn the latest information about pain policy.
• Consider joining these organizations, if appropriate, to receive pain policy updates.
• Visit www.regulations.gov to track pain policy of interest.
• Look up contact information for your local, state and federal elected officials.

Do:

• Contact your elected officials and policy makers about your pain policy agenda.
• If possible, sign up to testify at upcoming state and federal hearings.
• Submit written testimony.

Check:

• Check in with local support groups or state contacts of pain advocacy organizations to keep them posted on your efforts – they want to know!

Act:

• Enlist the support of others in your area to help with pain policy advocacy efforts.
• Participate in a “Hill Day” or letter writing campaign.
• Contact local and state elected officials to declare September as Pain Awareness Month.
• Track your pain policy efforts and make sure to follow up on your initiatives.

Download the “Pain Policy Advocacy” Checklist

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