Creating Policy Change from your Couch

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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Authored by: Shaina Smith

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We can only do one thing at a time to get to where we want to be. We’re alot farther than we were 3 yrs ago? I believe when they say multimodal they’re talking about all the [edit] that majority of cpps have tried, many times each for many yrs, many of us paying out of pocket for what ins didn’t cover or not have ins. Physical therapy, chiropractic, acupuncture, joint injections, spinal blocks, etc. I spent ten yrs doing that crap, pulling teeth to get an intermittent 10mg opioid while I did it too, not to mention all the discrimination, prejudice, etc I put up with. I also endured every kinda crap medications, steroids, nsaids, etc there was, so many I lost count an probably worsened my conditions!After finally getting approved for SSDI and finding an excellent PM doc, I went on long term opioid therapy. Have been doing well an stable 14 yrs, same dose, no side effects! Then came the taper. The rest you know. There’s no way with this opioid situation and all the PROPacocka out there that we’re going to get what we want! It’s the best we’ve got so far and I believe that if HHS task force made the final report anymore to our or their liking it probably wouldn’t have been passed by the vote? They had a pretty good diverse group, I believe. Any more lenient on opioids and prescribing for chronic pain, maybe they feared wouldn’t pass the Senate, causing them to go back to the drawing board and prolonging any help for us that much longer? My fear is that while I’ve been tapered down, since clarified guidelines and Medicare part D ins raising some of their pill limits back up, my doc has raised me back up some. But my fear is what happens if or when I lose my doc? He’s from my old neighborhood, husband drives me there every 2-3 mnths an there are no docs where I live that will even see you as a regular pt, even if not want meds, if you’re on pain meds! For yrs I was turned down by one pcp after another, 1/2 doz,just wanting yrly! Where do I turn for help or Dr?

Lisa MP

Does anyone remember the movie “MIRACLE ON 34TH STREET,”? This may sound off topic but please bear with me for a second. The premise of the movie was about a very sweet old man who claimed to be Santa Clause and had to prove he, indeed, was Jolly Old St. Nick. His story was published in the newspapers which motivated hundreds of people to write there letters to Santa with the mailing address to the courthouse were his case was being heard. When the hundreds of letters arrived, the mail bags were dumped on the judges bench, burying him beneath all the letters. The judge immediately declared that he was indeed Santa Clause.
I sumerized this movie In the hope the all us chronic pain patients could be motivated to start writing letters to our legislators, hand written (legibley), typed, and/or printed , placed in envelopes, addressed to all of our legislators. Mail them on a predetermined date so they will all arrive on the same day and will be delivered to the legislators at the same time. If you can, make copies for the alphabet soup too, CDC,FDA, DEA, AMA,ect.ect.ect. It only takes a copier.
I’m sorry for this being so long winded, but this is a serious issue for so many of us. We need to take serious action soon. If Senator Lamar Alexander is brave enough to step up to advocate for us, the least we can do is BACK HIM UP IN A BIG WAY!!!

Michelle Caccamisi

Thank you very much. Great tips! 💗

Maggie King

Alternative modalities is just a multi-syllabic term for “Medicare don’t pay day!”….
Of course in my state, Mississippi, pain clinics are folding without notice, and the opinion is they must’ve been pill mills. My PCP was down to 8 patients she RX’d opioids to. She cut them all off, one a 90 yo woman with months to live. My spouse was one too. The doc said “they” were calling, “they” were forcing her. …he didn’t ask her who they were. She gave him no TX plan or referral to PM. She knows none are taking patients.

MS has no medical marijuana, nor CBD w/ more than 3% THC. Kratom is banned in 15 counties. “Pain Management” in MS is more like “Ramping up Torture Levels”…..barbaric.
My PCP is younger, and I thought enlightened and patient-centered. Wow, so off base.
Apparently, the good news takes longer to get here. The RX monitoring, the forced dose reductions were in full swing in 2016 down here. Add the worst MD to patient ratios in US, and we are in crisis.
Neither my husband or I will have pain meds in July. That is month 15 for me with out any.
I am so exhausted just living I have nothing to fight….I’ve been an advocate for mental illness and Gulf Coast environmental issues…..I am out. Of. Gas.

dave

I dont agree with Ms Smiths ideas about the pmtf report. It is not person centered it is medicocentric and expertcentric. If Congress cared about persons who have pain they would have seen to it that they had adequate representation on the PMTF. 27 experts and one person from U.S. Pain is not my idea of person centered committee. As MS Smith should know-most of the ideas of the pmtf are out of the AAPM/APS playbook and use the same buzzwords- multidisplinary patient centered, multimodal. I call it the big lie technique.
If a person with osteoarthritis pain goes to a rheumatologist and bring the pmtf report and says I want svaroopa yoga, ips stem cells, and some heart centered meditation with manaka acupuncture- its very likely the undereducated rheumatologist cant understand no less agree that multimodal patient centered request. So i say the pmtf is a farce and in reality even if it was mandated providers dont have the education, the paradigm, the caritas nor the ethics to go along with the brave new world of pain care that the pmtf allegedly is endorsing.
Its time for realpolitik in pain care. Ms Smith can debate me in public on the issue. But U.S. Pain follows the money and we could talk about that in more detail- in public if Ms Smith would like ….

Sounds like pain management needs backers BC the illegal drug crisis cost them money and they need to replace it by the biopsychosocial model. This would get the DEA to stop hovering over them and add money to their pocket. Dr. Nagel said intractable pain does not have a cure and is very complex to treat, that they only have injections of steroids and opiates to give. At one time ( they ) gave out toxic NSAIDs until they decided it was too toxic to give. What about the people who’ve received it. Kind of afterthought. So how does the biopsychosocial model help pain at all? Really? Sounds like a fixed way to blame the patient. This article pretty much describes the biopsychosocial model . All intractable pain patients need to read this article.
http://www.madinamerica.com
Blaming the system may be the best therapy. By Meghan Wildhood
Really who’s best interest is this biopsychosocial model for?
Has anything we’ve said or done so far helped ( us ) ?
Notice that medicine is getting further away from using opiates and going even more toward psychiatry usage for the patient. Do your research, then decide.
Yes I’m poo pooing on your parade. It’s hard to forget and forgive. Only have to be bit once by the two headed snake of Medicine.

ElizabethR

Shaina, thank you very much for these detailed instructions. It sounds like you’re exceptionally well-versed and experienced in advocacy. I’m not great on phones, and as a member of “The Silent Generation”, no expert on social media. However, I can (and will) write letters, including to Sen. Patty Murray who is from my area. I’ve already written several letters on this subject to federal and state officials.

I really hope that the advisory committee’s report gets the attention it deserves. Considering that an estimated 50 million people live with long term, incurable pain, it would be terrific for our cause if we could muster up stronger support than we’ve seen so far. I did some advocacy for causes in my younger days, and I know how important large numbers are.

Thanks again!

jeffrey ulrich

Opiate crisis created by politicians thru propaganda delivered as a message to the ignorant masses but in reality just a campaign speech. By instilling fear knowing it would move votes in their direction. Once this propaganda platform is entrenched the next strategy is solving this hypothetical crisis by their election.
Once elected this false crisis is tabled so the newly elected politician can concentrate on profitable self-serving interests.

Julia Heath

Cheerleaders are important for our group of cpp warriors! Many of us are having to reach out to lawmakers in ways that perhaps we’ve never done before. I want to add my encouragement! In Texas, the cpp community was taking issue with language in a bill that had already passed the House. 99%of the bill was great, but there were about 3 sentences which seemed out of place, to be honest, which were giving authority for mental Healthcare professions and pharmacists to determine “best practices for opioid prescribing”… And we all know how dangerous and destructive that kind of thinking is when you consider that the 2016 CDC guidelines were written not only by mental Healthcare professionals, but also by addiction specialists who are anti – opioid zealots. So 2 of us cpp went to speak to the Texas Senate about this dangerous section of the bill. We each had 2 minutes to speak, but we were prepared and did our part. Well guess what? On the advice of us 2 prepared cpp, those lines were deleted from the bill! We affected change in just 4 minutes! It was a great feeling to get to do that – and I felt better about the sacrifice my husband took to get off work and drive me 4 hours each way to let me speak for 2 whole minutes! So my encouragement is to hone in on what your skills are (writing, public speaking, speaking on the phone, etc) and use them to make changes. It’s not as hard as it seems – I promise! And I’m not a politician that I should lie… 😁🤥

Max Beichert

Amen! And for those of you in states (many more than half) that currently have pain-related statutes already in place, your personal input has more clout than you could possibly imagine, without being let in a not-so-secret. Time after time we hear, even with majorly-contested legislation, that a dozen or more calls to a representative on a single vote is considered to be a “landslide” of comment. Seriously. If your state doesn’t legislate your medication, be ready for it. This is much more likely to happen long before the Federal government takes any nationwide action, if at all. Call your state legislators, and make them aware that “we’re” there. In our state alone, over 10,000 chronic pain patients are subject to “tapering,” and the rest to MME limits. Let your representatives know that we all vote, and when we hurt, we’re mad.

Denise Bault

Great ideas that can and will make a difference! Thanks for sharing!

Kat Koe

Thank you for providing this information. It gets frustrating when we’re doing all this work and we’re not even sure if it’s helping. If it’s not one thing we’re fighting for it’s another!, when will this madness end? But I digress, writing these letters certainly seem doable especially with the provided template and key talking points when making phone calls.

Gail Honadle

What Sen Alexander will do is STALL for the next few months, he is RETIRING. He has always spoken out of both sides of his mouth. I ought to know he’s been my RINO senator for 3 terms, he promised 2 and out, reengaged on that oath. Can’t get a answer out of his office, IF you can get through.

Gary Raymond

My Federal law maker referred me to rehab. My Governor set a Behavioral Specialist on me. I am not taking controlled analgesics. Can you guess which state I have lived in for 64 years? This is a witch hunt. But the hunters do not know what a witch looks like so they are shooting at anything that moves. Have you heard about the female student who was caught recently with 3,000 tablets of Fentanyl? That kind of stuff is not coming from our local pharmacies nor is it being diverted by victims of chronic pain.