How to Advocate for Chronic Pain

How to Advocate for Chronic Pain

Two dozen pain advocates gathered in Dallas this past weekend as part of the U.S. Pain Foundation Pain Ambassador Advocacy Summit.

The goal is to train more pain patients and their loved ones to communicate with policy makers, elected officials and journalists—all of them or at least some of them.

Most believe—and especially those who attended this weekend’s session—that the story of the pain patient is best told by the pain patient—and a lot of the weekend was spent telling and refining the patient stories.

As we moved around the room, we heard some very interesting “topics” from the advocates.

“How do I advocate for my children who are in pain?”

“I think I was fired because of my chronic pain?”

“My family just doesn’t get my chronic pain.”

“Prepare yourself—when you tell your story, not everyone will get it.”

“I can do advocacy from my bed.”

As the weekend ended and the advocacy training concluded, U.S. Pain Foundation outlined some tasks to help participants practice their advocacy skills.

  • Follow your state/federal lawmakers on social media
  • Schedule in-person meeting with your U. S. Senator and/or Congressional Representative aides…to educate them on chronic pain and discuss best practices report.

U.S. Pain will continue to support active advocates.

Advocates who want to be navigating through the issues at the state and federal levels were trained.

They were made aware of the policy successes that U.S. Pain has enjoyed and the issues going forward that are important to chronic pain patients, their loved ones and the elected officials that represent them.

As President Obama once declared, “Democracy is not a spectator sport,” and that AIDS activists argued that changing stigma to compromise changed the discussion about issues we care about.

Do you know who your Congressional representative is?

Do you know who your state representative is?

Let us know.

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Authored by: Ed Coghlan

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Melissa

Imagine being held prisoner of your own body and it torturing you worse than what fake movies do to the actors.

Gail Honadle

Facing Rotator Cuff surgery, and not looking forward to the PAIN and 6 months of down time, with only 13 weeks of PT. I’m a Senior, I don’t heal fast, and PT has NEVER worked. It brings MORE PAIN. It’s taken 2 yrs to rehab the Thumb surgery after the 13 weeks and I still have NO fine motor skills. Still eat with a spoon.

Read article from website medpagetoday.com
Titled: (pain specialist pile on CDC guidelines.)
Basically this they just saying even though the guidelines were for acute pain & for Primary Care physicians. That nothing has changed even though CDC made clear that chronic pain people can still be treated. 1 doctor mention he has a list of 40 people that committed suicide do to force tapering or abandonment . They realize that intractable pain persons are now going to the streets for heroin to get pain relief. The problem is the imprisonment of Physicians for prescribing opiates. Therefore nothing will change.

Surgeons are telling patients like me to take CBD oil for pain. FDA, the state doesnt regulate what is in CBD oil. My PT wrote my surgeon that my Gant was wrong, unable to do most PT due to increase pain. I’ve had 4 extra visits after surgery to complain to my surgeon how I was suffering which fell on deaf ears. I was very exact burning Sharp pain.. 3 words plus pointing to the area. Surgeon made me wait 6 mos before doing another MRI. @ none of these visits even before surgery did he check the range of motion of my hip but yet he wrote he did. I have a tear in hip. If he was a car mechanic no one would use him. But yet Physicians / surgeons get by w/ sloppy work. I read article 4 out of 5 people feel they dont get quality of care. This article did not mention intractable pain
people. We no longer exist to the medical community unless they can make big dollars doing surgery. We do not exist period to anyone no matter how we say it. I suggest calling Medicare every time you have a bad visit & tell them why. No one expects this treatment if they take your car to a mechanic you can replace a car but you can’t your body. Maybe Medicare would pay them more but $300 for 3 minutes is good money.

Jan

I think one of the best things that could help pain patients advocate, would be to tell them to Google the work of 2 men who almost single-handedly have written, the most well-researched, fact based evidence of the so-called Opioid Epidemic which in reality is “a heroin and illegal drugs problem”.
1) Dr. Richard Lawhern’s website Face-Facts
2) Dr. Josh Bloom’s 65 articles on the myths about Opioids

They have all the statistics, maps, charts and evidence to shred to pieces the myths put out by Andrew Kolodny, PROP, CDC, PharmedOut, DEA, etc.

Please investigate these men and their evidence on Google.

Lynda

I totally agree with becky and understand Jen’s anger & frustration.

Thank you for your support & keeping us informed & sharing stories cpp’s have submitted. You are an active participant in our fight to be heard and that means a lot to a lot of us! Keep on doing what you do … A lot more of us cpp’s are joining in on social media dialogues & contacting our legislators, educating our friends & families & speaking out. Unfortunately, too many cpp’s can not leave their houses or their beds & cannot join this battle on the frontlines. We have to speak & fight for them, as well as ourselves. And YES I do believe we are in a war. However, that being said, I think we have to be diplomatic with others or they won’t pay attention. We can scream here and in support groups, but we need to be careful how we come across to the policy makers & the general public. Your last report that asked us to describe our painful lives in only TWO sentences, reminds us that the shorter more concise statements will prompt more discussion & less skepticism about us. We need to re-educate the public to take away the ‘stigma’ & ‘misconceptions,’ about who we are. We are not addicts or drug seekers, we are genuinely in pain and that pain keeps us from living our lives as we would like. Sometimes, or even all the time, we HAVE to take medicine to be able to function, just like diabetics or heart patients or a host of other people with a disease do. That’s a point others can relate to because it’s more acceptable than saying we want our pain pills. We can explain that narcotics help us be able to participate in life. There are a bunch of drugs people have to take that have more adverse effects in their bodies than narcotics do.
I know I am singing to the choir! I just want us think about how we come across to others.

Cindy too

Question to the author for clarification:

Where you wrote “discuss best practices report”, are you referring to the May 30, 2019 final report of the Pain Management Best Practices Inter-agency Task Force which can be found on the HHS website? at:

https://www.hhs.gov/about/news/2019/05/30/pain-management-task-force-issues-final-report-on-best-practices-for-treatment-of-pain.html

I’m inferring this, but want to be sure, and also, want to have it spelled it out for any other readers who like me arent’ sure, and also to inform other readers who aren’t aware of this critical report, which along with the spring 2019 FDA statement and spring 2019 statement by the authors of the 2016 CDC Guidelines, made this spring a huge time of wins for the pain community.

working hard in TEXAS

well.
i have been politically active/involved since i was able to vote.
i have found, since the CDC forced me to include my chronic pain in politics, that elected officials are ignorant, and sometimes willfully so, about many of the issues!
in the past FIVE years, i have made SO many appointments and scheduled SO many conversations with health staffers and representatives that it is hard to have much hope.
i saw this coming back in 2012…..by 2014, i realized the propaganda war was in full swing.
my parents, friends, acquaintances ALL had drunk the koolaid by then…that drs were de-facto drug dealers and pushers, that “opioids” (the new word for opiates) were poison and any exposure to them would lead to eventual addiction, etc, etc, etc.

i will NEVER give up, but engaging in advocating with gov’t officials is hard work!
be prepared. don’t get discouraged.

ElizabethR

Thank you, Ed, for everything you do on our behalf.

I do know who my state and Congressional representatives and senators are, and I have contacted them, along with my state’s attorney general and various health officials. With one exception, the only response I’ve ever received–if any at all–is a form letter. There’s rarely any indication that the content of my communication was even read, let alone actually considered. Very discouraging but, that said, I plan to keep trying.

I’m just an ordinary citizen without position or money, and therefore my voice is easily dismissed. However, if the millions of patients living with long-term pain could speak out as a unified force through one voice, we’d greatly improve our chance of being heard. Connecting with those in power is a significant factor in shaping the favorable media and public attention the “opioid crisis” has garnered. As I’ve said before, we need a high-profile, well-connected, politically-savvy individual (or more) to speak out for our cause. A hired lobbyist or attorney would be very helpful, and I would contribute to funding same. Most CPPs probably do not have a lot of money, but if even 2 million of us contributed as little as $2-5/month, we could raise a pretty impressive sum.

Again, just my view. . .

Sandy Miller

I’ve been forced to try a SCS or I won’t get the measley amount of my pain medication I get.
Yes, I’ve turned to buying pain medication from others, even though I have many documented reasons for needing meds. It’s BS that I can’t get what helps me to live not just exist. I’m fed up with government putting their nose in my medical problems. I’m not an addict, but I’m dependent on medication to live. CRPS is a horrible disease and no one should have to suffer the way many of us do!
They need to be held accountable for so many choosing to end life because of this.

Dee-Dee

Talking with these bureaucrats about chronic pain and the wake of devastation left by the “guidelines” has been “like clapping with one hand.” (Anthrax, Caught in a Mosh)

Leo

It does appear the law enforcement agencies are doing the insurance companies dirty work. But I also believe these guys and gals are just trying scratch a living by following funding or carrot provided by President Trump. I hope and at this point believe he has a true knowledge deficit and has placed individuals that also have no experience or education that have or want understanding of this complex issue. I also believe the insurance company CEOs have president Trumps focus on how putting immense pressure on Doctors and pharmacist increase their bottom line profits. It truly appears federal funding provided to our great teaching university comes with a jaded perspective or clauses that force these institutions to be how can say “too quiet during this time of cruelty”. The only entities benefiting from the white houses opiod policies are health insurance and pharmacy benefit manager executives. The most frightening aspect of the last three years is the blatant move away from using objective scientific evidence as rationale to make an intelligent decision. Most should agree by now that the only thing consider is the P&L and its effect on Bonuses.

I do believe and have Faith that President Trump is the only person that can quickly stop this unneeded suffering. From a voters perspective it’s a no brainer. That is if wants the millions of intractable pain populations vote.

Churps57@gmail.com

Hey Jen. I couldn’t have said it better. GOD BLESS YOU.

Thank you for sharing. I’d be interested in attending a summit like this in canada. Are you aware of any or where I could find information on this sort of thing?

THE DEA, CDC, INHUMANE DOCTORS, PHARMACISTS etc. NEED TO BE HELD RESPONSIBLE FOR SUICIDES OF CHRONIC PAIN PATIENTS AND THOSE THAT HAVE BEEN FORCED TO STREET DRUGS FOR RELIEF BECAUSE FOR MANY SPIRITUAL/ RELIGION IS THE ONLY THING STOPPING PEOPLE FROM SUICIDE.
THEY NEED TO KNOW THEY ARE RESPONSIBLE FOR THESE DEATHS!!!
STOP BEGGING FOR HELP AND START STATING THE FACT THAT THEY ARE “RESPONSIBLE FOR THESE DEATHS.
THEY DO NOT NEED OR CARE TO KNOW ABOUT HOW PAIN FEELS BECAUSE THEY LIVE IN THEIR SELF MADE BUBBLES AND HAVE ACCESS TO THE PAIN MEDS. WE ARE BEING DENIED.
BOMBARD THEM WITH THE “TRUTH”!!!!!!!!!!!!!!!!!!!!!!!!! THEY CANNOT STOP ILLEGAL DRUGS, THEY NEVER COULD AND TO KEEP THEIR JOBS, TO PACIFY THEIR BOSS. THEY NEED A SCAPEGOAT ………YOU, I AND DOCTORS ARE THOSE SCAPEGOATS AND IT NEEDS TO BE SCREAMED FROM EVERY PATIENT, FAMILY/FRIENDS …OR WE WILL NEVER, NEVER BE HEARD. THEY ARE DESTROYING LIVES TO COVER THEMSELVES AND WE HAVE DONE NOTHING BUT FIGHT FOR OUR VERY LIVES WITH CRIES, PLEADING AND FEATHER SWORDS.
WAKE UP!…WAKE UP!!!!!!

becky

Thank you all for your valiant efforts. Thank you, Ed, for all you do to communicate with everyone and guide us to what we can do to help those who have no quality of life due to lack of pain management.
Big hugs to all, and prayers for those suffering endlessly.