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In the first part of this series, we talked about the importance of advocacy. Last quarter we focused on how to create a pain awareness event. Now, let’s look at how to make a difference on a broad scale: getting involved in pain management legislation.

In the US, states are responsible for regulating and defining much of the pain management policy that affects whether people with pain have access to the best care—comprehensive, whole-person care that works for the individual. There are several specific areas in which you can focus your advocacy efforts to make a significant impact. But first, come prepared!

BE INFORMED, BE INVOLVED WITH:

The health care system. Take the first step by educating yourself about our country’s health care system. Find out more about how health insurance works and about the Affordable Care Act. How do people without insurance obtain care? Then, learn about the legislative issues that actually affect patients, families and care providers. Becoming involved with a pain advocacy organization is a good way to get in-the-know quickly and see what issues face people with pain, as well as their providers, and how pain policy affects those issues.

Regulatory bodies. There are many regulatory bodies in the US that make decisions that affect people with pain. One of the most important is the Food and Drug Administration (FDA), which oversees the drug and medical equipment industries and is responsible for creating regulations, approving drugs for market (based on safety and efficacy) and protecting the public by advancing changes that make food and drugs safer, more effective and more affordable.

The Drug Enforcement Agency (DEA) is another organization that shapes federal pain policy. Because the DEA regulates controlled substances, in particular the ingredients in pain medications, it can have a direct influence on what your provider prescribes—which medications, how much and how refills are handled.

Policies and guidelines are also created by the states, and these regulations can affect access to care, medication and integrative therapies. Regulations.gov is a helpful resource to learn more about pain policy in your state.

Policy leaders. Both elected and appointed policy leaders have a constituency to which they must answer. If you don’t know your Senate and House representatives, visit www.Thomas.loc.gov. Learn about their health care agendas, and see how they’ve voted on pain policy issues. This will provide a gauge for their level of commitment to the pain community. You can also ask them how many voters in the district are affected by pain. This will help you know how many people might support your advocacy efforts.

DEFINE YOUR AGENDA

Decide which issues you want to focus on. What are you most concerned about? Learn everything you can about the issues you want to pursue and think of possible solutions. Here are just a few concerns that relate to access to whole-person pain management:

• Step therapy or “fail first” regulations and specialty tiers, whereby insurance companies require a person to try the least expensive therapies or medications, even though they may not be the most effective or the ones prescribed by the person’s physician

• Escalating out-of-pocket medical costs

• Pain practitioner education

• Abuse deterrent formulations

• DEA’s rescheduling of hydrocodone to Schedule II

• Reimbursement for integrative therapies

• Making medical marijuana available to chronic pain sufferers

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3 WAYS TO TAKE ACTION

Decide the most appropriate action to take depending on your agenda and resources. U.S. Pain Foundation can help you with three of the most direct and effective legislative advocacy campaigns:

1) MEET CONGRESSIONAL MEMBERS.

Share your stories and photographs with legislators to help them understand the effect of their bills. Visiting them personally will give your issues credibility and establish a relationship that promotes ongoing, two-way dialogue.

Here’s a step-by-step guide to meeting your representative:

• All phone numbers for state and federal legislators are available on government websites, or you can call the Capitol switchboard at 202.224.3121 and ask to be transferred to your congressional member’s office. You can also try to set up a meeting in your member’s local office. Request a meeting, clearly stating what issues you wish to discuss and who will attend the meeting. Confirm the day before the meeting.

• Be aware beforehand of your member’s views on pain management and what committees they may sit on or bills they may have introduced. They may be very involved in pain management legislation, or this could be your opportunity to educate them. Use www.Thomas.loc.gov to get a sense of what pain legislation is currently pending.

• Prepare literature to leave behind. U.S. Pain can help you put together a packet of information for attendees to be given out at the end of the meeting. This should include the issue you are concerned with and data exemplifying the importance of that issue, which policy change or bill you would like the member to act on or sponsor, fact sheets and your contact information. Your story can be included in the packet, one page maximum.

advocacy3• Prepare and be on time. Allow time to go through security at government offices. If you are going with a group, decide who will be the main spokesperson.

• Thank the member/staff person for his or her time. Have the group members introduce themselves, including state and district. Briefly state your issue; do not assume the member/staff person will be well versed on the issue.

• Provide your personal story and explain clearly how pain affects your life, work, family, as well as the lives of the member’s constituents. Provide data, propose solutions and leave this information for review.

• Listen! You’re meeting to establish a relationship, not to lecture. Communication is a two-way street. Ask for the member/staff person’s views if they’ve not given you feedback.

• Summarize your requests to ensure clarity. Discuss next steps for both parties and make this part of your thank-you correspondence (also include a meeting summary, referencing date, time and list of attendees). Thank the member/staff person and tell him or her when you will be back in touch. Follow-up is key.

• Go back to your advocacy group with a thorough briefing of the meeting, and discuss next steps.

advocacy42) TESTIFY IN PERSON AT A STATE OR FEDERAL PUBLIC HEARING.

If there is a particular bill or policy issue you would like to address, find out when and where it will be dis-cussed in the state or federal legislative bulletin or state and federal government websites.

• Try to meet, write or call the bill’s committee members before the hearing to establish who you are and what you’d like to say.

• Register to speak in the public list.

• Write a complete testimony, then extract your main ideas and arrange them cogently for the verbal testimony. Give the full written testimony to the committee members before you speak. The legislative bulletin will tell you how many copies are needed.

• You will have only three to five minutes to speak. Practice your testimony in front of a mirror with a timer.

• Draw on your own experience to make your testimony unique.

• Be prepared to answer questions.

• Send a written thank-you to the committee and include your testimony.

• Report back to your advocacy group on your experience and discuss next steps.

3) SERVE ON A COMMITTEE OR GROUP THAT FOCUSES ON ISSUES YOU ARE MOST CONCERNED WITH.

Or join U.S. Pain Foundation and get involved. You can apply to be an ambassador for U.S. Pain Foundation if this type of advocacy sounds like something you would like to do. Remember, there is strength in numbers. Communicating with other ambassadors nationwide who share your concerns will keep you in the know, give you fresh ideas and start the networking process that is so important in effecting change.

You will also make friends and find colleagues who give you confidence, support and a sense of purpose in the pain community. {PP}