Creating Policy Change from your Couch

By Shaina Smith – U.S. Pain Foundation

Don’t be timid. That’s going to be the greatest, sound advice you’ll get from me today. What do I mean by those three words? I’m saying forget about past judgements casted by nay-sayers or people who poo-pooed your chronic pain and symptoms. I’m saying to let go of the negative experiences you may have had when opening up about your story because your story does and will continue to matter. It’s the stories that are shared on The Hill with lawmakers which have the power to change how chronic pain is managed in America.

I’m going to be your virtual cheerleader and my goal is to motivate you to take your incredible strength as a pain warrior, tie it in with your personal journey, and share that gift with Congress. I know it seems hard, but I also know you can do it. I too live with chronic pain and understand the physical, biopsychosocial, and financial impact it has on a person and a family. Outside of that, I’ve also witnessed, first-hand, how the patient perspective can and has shaped policy in my role as Director of State Advocacy and Alliance Development for the U.S. Pain Foundation.

Right now, is among the most important opportunities to take action. There’s a new report on pain management developed by a federal advisory committee that was mandated by Congress. It’s pretty awesome that Congress decided to focus on pain, right? Well, prepare yourself-because what’s even more exciting is that Senator Lamar Alexander, Chairman of the Senate Health, Education, Labor and Pensions Committee, recently disclosed to the media that the next committee hearings will include a heavy emphasis on the report’s findings.

Shaina Smith

The recommendations from the federal advisory committee includes the need for access to affordable, multidisciplinary care and promotes an individualized approach to pain management. In other words, it states that we should be treated like a person, not just another number in the health care system. It emphasizes the idea that people should be treated as unique individuals with unique needs and unique health concerns, and not subjected to blanket rules or policies that interfere with their providers’ suggestions for treatment.

Now, this is the part where you may be inclined to do a little happy dance, pause and think to yourself, “But how can I help push this important report from words on dozens of pages to actual policy?” Don’t worry pain warrior brothers and sisters, because this virtual cheerleader is here to give you tips on being a successful advocate for this congressionally mandated, milestone of a report.

Do you remember how I said I was just like you? Okay, good. I was testing your memory. Who doesn’t like a little brain fog humor? In all seriousness, I also wanted to bring up the point that I’ve had bad pain days where my greatest accomplishment is that I brushed my teeth or remembered to pick up my son from school. Therefore, all advocacy efforts created by someone like me are made with the understanding that some of our volunteers have a lot of bad pain days or are even bedridden. That’s right, you don’t need to leave your bed in order to help make change for the pain community. What’s more enticing is that taking steps to help implement sound policy takes only a few minutes.

Take Action

U.S. Pain has put together two online engagement campaigns, as well as several educational tools, to make the advocacy process as easy and convenient as possible for pain warriors-while having a major impact.

  1. Submit a pre-written letter: We took the guesswork out of who you are supposed to contact, what key points should be made and placed it all into this online engagement. The letter urges your lawmakers to schedule a congressional hearing. This can be sent by anyone to any member of Congress.
  1. Make a call: We’re targeting specific committee members, some of which may represent you at the federal level! Please check to see if you’re eligible to participate in this online campaign. This engagement provides the information you need, including taking points, to dial policymakers. If you don’t have a representative on one of the two committees, the campaign will let you know based on your zip code.
  2. Spread the word: Do you like to advocate using social media? That’s great! You can increase our reach to other pain warriors, making them aware of these online campaigns by clicking here. Want to use your own words? Go ahead! Just be sure to use the hashtag #PMTF. You get extra points for tagging @US_Pain.
  3. Nifty resources: You can watch a recent webinar that details the report and calls to action. The PowerPoint slides can be downloaded here.

 Tips and notes

Don’t be discouraged if your actual lawmaker doesn’t pick up the phone when you dial their office. In most cases, a legislative aide will be answering your call. That’s okay because I’ll let you in on a little secret: a lot of lawmakers depend on their aides to educate them on issues impacting their constituents and even help write proposed bills for their “boss”.

Keep your phone message short, concise and on-point. Don’t stray from the intent of your call.

Try not to let your emotions distract you. While it may seem like the appropriate time to openly express your dissatisfaction with insurance coverage or financial barriers to therapy options while you have an aide on the phone, too many topics will dilute the matter-at-hand.

Speak slowly when calling and leaving a message with an aide. You’ll want to make sure that your tone is pleasant, professional, respectful and clear.

Remember to share your first, last name, what city or town you live in, and why you are calling.

Before hanging up, ask the person on the other line to please share the message with your U.S. Senator and or Representative, and ask how you should follow-up to determine if the Congressman/woman is in favor of holding a hearing on the report on pain management.

Always thank the person for his or her time and should their office require additional information on the task force or the report itself, state that you would be happy to provide them with those materials (such as an online link to the report, for example). U.S. Pain can help you with questions you may not know the answer to.

Should you decide to submit your own letter to the Congressman/woman’s D.C. and/or in-district office, on top of the online letter campaign, be sure to share 2-3 sentences about your personal pain journey. Details may include information about your disease, what it’s like living with that condition, any negative barriers you have had to face as a person living with chronic pain, the impact pain has had on your personal life, career, family, mental health, etc. You may want to also include how the report on pain management, if implemented into policy, would impact your treatment plan and pain journey.

Now that you have the basic information on how to engage on the pain report on pain management, I want to leave you with some final thoughts before signing off: you’ve got this, so don’t be timid. Step up and speak out. U.S. Pain is here to offer its support, encouragement and validation that you’re not alone and we can create a better tomorrow for children and adults living with chronic pain.

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