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Home Politics & Law

To Be a Chronic Pain Advocate

Optimize your advocacy

Jay K Joshi by Jay K Joshi
April 21, 2023
in Politics & Law
3
To Be an Chronic Pain Advocate

Creative Commons

For all the talk about meetings being overrated, they’re valuable if you know what to look for. Usually, it’s in what’s not said: the part of communication that’s decidedly non-verbal.

In recent weeks, I’ve had the fortune of meeting with multiple state representatives and their staffers in different parts of the country. Some were from blue states and some were from red states. But the meetings would usually go the same way.

Every politician’s office has a designated point of contact for outreach: the front person, if you will. That person decides whether the office should engage with you, and whether you are credible and worth blocking off time for. Most communication at this stage comes through emails or phone calls, though in this era of rapid, digital conversation, email predominates. Grammar matters. General etiquette goes a long way. But above all else, mention you are a constituent and have a clear focus for a proposed meeting. Those two factors alone will tilt the scales in your favor.

Do your homework. Instead of asking to talk about the plight of pain patients or the lack of resources for patients with substance use dependencies, ask to discuss a specific policy or legislation that you care about. Politicians don’t do well in the abstract. They much prefer to talk about something concrete, relevant, and, most important, related to their constituency. Remember, a politician lives and dies by the vote. If you have something that directly affects voter turnout, such as a stance on a new bill or policy, then you’re more likely to get somewhere.

The next step, should you be successful in your initial outreach, will be an in-person, or, more likely, a virtual meeting. This is where that designated point of contact hands off communication to another staffer. From here on out, be keenly aware of everything.

Who they assign you to speak with determines how interested they are. Research that person and find out whether he or she has done work in pain management, addiction or anything opioid-related. Find out how long he or she has been on the staff. If you find yourself speaking with someone who is relatively inexperienced, then the meeting is likely a feel-out session where they’re still assessing whether it makes sense to speak with you. If it’s someone more senior, then they’re interested in hearing you out.

My advice to you: prepare for both scenarios the same way. A strong first impression, regardless of whom you are speaking with, cannot be overstated. Look up the person you’re speaking with. Look up the politician’s voting record and public statements on key issues. Review legislation he or she has supported in the past. Pick out relevant press releases to quote in the meeting. They want to see you do your homework. You’ll appear more credible and you’ll be more prepared and confident when speaking.

During the conversation, stick to the talking points. Convey your message succinctly. Anticipate how they’ll respond and prepare accordingly. If you wish to discuss the lack of physicians who prescribe opioids in your state, get testimonies from other patients in your area or find examples of physicians who stopped treating chronic pain. Always find a way to return to the main point that matters to them: your message matters to this constituency and a lack of action would lead to poor results at the next election cycle.

Those are the magic words. They will pique interest and help convey your message.

I hope these nuggets of advice help you to formulate a plan of action and give you the confidence to speak with your local, state, or federal representative. Remember, no amount of lobbying dollars can match the outreach of a well-prepared constituent. It’s only your lack of action that leaves you unrepresented.

I’ve prepared some links to resources that can show you how to prepare for and connect with your political representatives. Please start by crafting a detailed, thoughtful message. Something you convey either by email or phone. Once you’re in the door, prepare as much as you can. The better you present yourself, the more effectively you will present your message.

If you have any email templates that have worked in the past, please post them in the comment section below. If I missed any links or resources you find valuable, please post them as well.

Thanks!

 

Links:

https://www.thedoctorpatientforum.com/

https://painwarriorsunite.com/state-by-state-index

http://face-facts.org/lawhern/take-action/dr-lawherns-citizen-lobbying-materials/?fbclid=IwAR13HsAww_X5Q4XdOfQv3WVejxfpPd1tZ0f0jp7eZqAsBOG-SWWYG7q443U

https://www.ncra.org/home/get-involved/advocacy/Grassroots-Lobbying/Writing-Effective-Letters-to-Your-Legislators

https://www.apa.org/advocacy/guide/letter-email

https://5calls.org/

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Jay K Joshi

Jay K Joshi

Dr. Jay K Joshi serves as the editor-in-chief of Daily Remedy. He is a serial entrepreneur and sought after thought-leader for matters related to healthcare innovation and medical jurisprudence. He has published articles on a variety of healthcare topics in both peer-reviewed journals and trade publications. His legal writings include amicus curiae briefs prepared for prominent federal healthcare cases.

Comments 3

  1. Anon md says:
    7 months ago

    I enjoy your podcasts so much and appreciate you more than I can convey. What is disheartening, however, is that I can barely make it through some normal activities of daily living some days (not all) with lots of shortcuts and, although I used to be a successful MD, I can’t organize my thoughts enough to do anything really. Certainly not what you’ve laid out. I used to get excited reading an article like this; it’s an awesome job outlining what needs to be done by a healthy person or at least one with fewer limitations than a lot of us have. I just grieve now. And I’m sole caregiver to my spouse who is worse off than I am. Despite therapy, I have broken down in tears talking to staff at my Senators’ offices trying to advocate. I’ve watched too many horrible deaths. I immediately hear the judgement, and hearts and minds close. I’m at wits’ end. I now have a cancer diagnosis and I suspect spouse is suicidal.
    I suspect our politicians know this is about the money and therefore they won’t budge.
    There were a few opioids I questioned myself. OxyContin was marketed as a twice a day medication, which is much better for compliance, when it was known to wear off in 8 hours. That caused break through pain, which caused providers who were unaware of the pharmacokinetics to increase the dose of OxyContin, instead of covering the.off hours; so that patients were exposed to a higher dose than needed. Also some formulations of fentanyl may have been prescribed a bit aggressively and with bribes. Suboxone, (which settled for 1.7 billion) falsely extended its patent in mint flavored film, which was both easily smuggled into prisons and attractive to kids for poisonings but sold as somehow safer/better than tablets. Bribes were also given to prescribe it. That settlement didn’t get much press. DEA was aware of suspicious orders from the beginning and did nothing but spoke to reporters about it, then overreacted after the fact. The “studies” enrolled people with run of the mill aches and pains and now the whipping boys and girls are patients with devastating, progressive illnesses and physicians. You can’t make this stuff up.
    I keep wondering where the families of the patients in pain are-are they ashamed, do they not believe? Why are physicians or their professional organizations not lobbying to fight restrictions? Again, I think it’s all stigma, and it’s all related to growing fascism that requires a scapegoat, or scapegoats. We are “supposed” to suffer. Good luck to everyone.

    Reply
  2. Helen Borel,RN,BA,MFA,PhD says:
    7 months ago

    Dr. Joshi, I’m pleased to see this website and read you writings. Speaking of being a
    CHRONIC PAIN PATIENT ADVOCATE (eek, not a chronic pain advocate), I think you may wish to know of the book I carefully researched and wrote between April through October of 2018. It’s been on sale at AMAZON since early 2019. It’s “AMERICAN AGONY: THE OPIOID WAR AGAINST PATIENTS IN PAIN” https://www.amazon.com/s?k=AMERICAN+AGONY+by+Helen+Borel&crid=3SIJQGNP1Z8M7&sprefix=american+agony+by+helen+borel%2Caps%2C688&ref=nb_sb_noss I’m Helen Borel,RN,BA,MFA,PhD Nurse/Writer/Psychoanalyst PsychDocNYC.com
    just so you have a sense of the scope of my knowledge, expertise and writing/publishing experience. Someone without my 18 years as a SENIOR WRITER on MEDICINE AVENUE — my designation for that enclave of med/psych/pharm ad agencies on NYC’s Madison Avenue — couldn’t have produced this COMPENDIUM of all aspects of the problems this book elucidates in the half-year I dedicated myself to researching, outlining, and creating each chapter…and the strong criticisms of the various government entities that are still destroying pain patients’ and paincare physicians’ lives. I wrote the book angry at government OxyMORONS and Cold Turkeys (VA, DOJ/DEA, CDC) who’ve destroyed such patients’ and physicians’ lives. I’m heartbroken that American journalists aren’t on this story until we get government bureaucrats OUT OF THE PRACTICE OF MEDICINE…AND THEIR PEA-BRAINED FORCING THE PRESCRIBING OF OPIATES AND OPIOIDS in such low doses they wouldn’t relieve the pain of a flea. And the innocent physicians languishing in prison, some becoming ill and dying, some suiciding; pain patients unmedicated suiciding. This is an American Holocaust…I’m still angry that such suffering patients and physicians are unhelped while gov’t bureaucrats continue this rampage on the salubrious treatment of pain and on the MDs, DOs, PAs, NPs, and PharmDs, PhGs who’ve provided appropriate analgesia for suffering patients. I do point out DOJ and DEA awful counter-medical actions throughout this book; but you’ll be happy that I devoted Chapter 22 to the OxyMORONS of the DOJ/DEA “THE WRONG ARMS OF THE LAW”. I figured you’d want to know of this book rich with info for patients and doctors.

    Reply
  3. Krista Bartel says:
    7 months ago

    Mr. Joshi,

    Thank You very much, Sir!

    Reply

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