Don’t Punish Pain Rallies for September Gaining Momentum

Don’t Punish Pain Rallies for September Gaining Momentum

By Ed Coghlan.

A Rhode Island woman has created radio and publicity materials to help drive attendance at Don’t Punish Pain Rallies that are being held nationwide on September 18.

Claudia Merandi, who suffered from Crohn’s Disease has been a patient advocate who, as she said, “was at a standstill with my (Rhode Island) Department of Health.”

It was time to do something else.

Merandi’s efforts appear to bearing fruit—over 60 rallies across America are already scheduled and she thinks the number could hit 100 by mid September.

Here’s a list of the rallies that are already scheduled.

While it started as an effort to have rallies in every state capital, Merandi’s advice is do something.

“If the state capital is too far away, have a rally at a pain management center or a pharmacy,” she said. “The idea is for the patient point of view to be heard.”

Merandi created a website for the Don’t Punish Pain Rallies being held nationwide on September 18, 2018. A roster of rallies and useful publicity materials are maintained there. The Don’t Punish Pain organization does not raise money and everything accomplished is on a volunteer basis. If you would like to participate or attend a rally, you may visit us on Facebook or send us a message.

Here is the website: dontpunishpainrally.com/ and a link to the contact form if you want to learn more about how to organize and promote the rallies in your area.

Merandi also created a radio ad that she’s placing in Rhode Island and people elsewhere are welcome to use it if it can help their attempts at mobilizing support for the September 18 events.

Here’s a link to the ad.

Merandi does a lot of what she calls “face to face” patient advocacy in New England and lately has also been working to mobilize physicians who she said are frustrated by the impact of the government’s interference in how they treat their patients.

Here’s their Facebook page.

If you plan to get involved, share your plans in the comments section of the National Pain Report and some of our readers may want to join you.

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Authored by: Ed Coghlan

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Patty McMeans

Good Morning,

I very much want to be involved in the Oklahoma Rally. I would like to speak for myself and 2 other people that are bed bound and can’t come.

My business is a sign shop. So I’m going to make some signs to carry and a banner for the table.

If I can be of anymore help, please let me know.

Thank You

Patty

Julie Hicks-Buford

I posted a note on here yesterday about wanting to make it to the Baton Rouge, LA rally, but for some reason it has been taken down. I even offered rides to people in my area that had none. I was also ready to provide references. Well, ignored or not, I’m going to make it to the rally even if I have to go alone and bring the proof that I have that Gov. John Bel Edwards stated himself that the bills and statutes that he signed into law were clearly not meant for the chronic pain patients, along with cancer pain, palliative and hospice care.
BTW, my Facebook account is under my married name, while I use my maiden name for other purposes such as business that relies on copyrights.
Still, if anyone needs a free ride, please get in touch with me through my Facebook account-Julie Buford. Thanks

Julie Hicks

I would very much like to participate in the Louisiana rally, but am unable to get in touch with the contact persons. I can provide rides, help with handouts, as well as distribute research I’ve done on my own proving that the recent laws/statutes passed are not supposed to apply to chronic pain patients. I realize I’m taking a risk giving out one of my phone numbers, but this is how stronly I feel about this. Julie @ (504)327-4594

Julie

Hi, I would very much like to join/help out with the Louisiana rally in Baton Rouge but I can’t get in touch with the people listed as contacts. If anyone sees this please get in touch with me (Julie Hicks) ASAP as I can help with driving as well as helping with the handouts, as well as the research I’ve done on my own that proves the laws passed in Louisiana ARE NOT meant for Chronic Pain patients. I’m taking somewhat of a risk by listing my phone number (504)327-4594. PLEASE!. Only serious callers only. Thank you

Rita A Kimbel

I have to get to this rally, I’m going to treat it like a doctor’s appointment and get there on time. I’m going to hand out fliers before hand at the local outlet center,of course with help, to not try means it doesn’t matter. This matters so much to me, being cut off, not tapered, off oxycontin by UnitedHealth without concern of my health. I’m now, more than year later back on an opiate. 20 months suffering without and I’m in fear it will be taken away again in the future. I have to do something, let go of my fears of how hard it will be to do this, get the word out if you can’t make it, but we must be heard. Non pain people have no idea what’s going on with our medicine, when they hear how I’ve been treated, in my condition they can’t believe it. Yes it’s happening to us and no one knows, till it happens to them.

Julia Heath

Come join us at one of the Texas rallies – the one I’m helping with is in Dallas. If you don’t find a rally in your state (as someone mentioned below) it’s because someone hasn’t stepped forward in your state to organize one. Come to the national Don’t Punish Pain Rally page and get all the info needed to organize a rally near you. This is a grassroots movement that started late last year and here we are with thousands of members nationwide and organizing the 2nd rally in one year. Let your voice be heard on the issue! The general public and media need to know what’s really happening to our fellow chronic pain sufferers – this is our opportunity to get the truth out there! Let’s stand together & support each other with the dignity and honor that this suffering deserve.

Mavis Johnon

I tired to find info on a Rally in my state or area, and could not find it. This “Rally” does not appear to be very organized, and there don;t seem to be many people involved. I also question the use of Facebook, since they may use the data for other purposes, like sell it to the same agents that created this false narrative in the first place. Most of the people I know with chronic pain are either too old, in to much pain or too debilitated to function or consider attending a Rally. Some of us have already been attacked and Stigmatized, so sticking our necks out in this climate can be dangerous.

sandy auriene sullivan

@Kelly Howard “Oregon, where they’re about to enact a complete ban on ALL opioids for ALL pain conditions, no exceptions (for low income & medicaid patients, at least for now, which adds class discrimination onto medical abuse).”

This is the time to contact a human rights group like the ACLU; this is discrimination by the government and their doctors; against low income patients. That’s discrimination the ACLU is looking for; I’ve been disappointed in them as well.

Considering that minorities and women are the first to be discriminated against when it comes to pain treatment. I just was laughed at by a cardiologist for having a 6th bout of shingles. My Ear/Nose/Throat doc said reoccuring is common on face but the cardiologist? Nah… he thought that was stupid and wrong. Well he’s not the guy who see’s it – the ENT does. It’s not uncommon at all. Nerve damage to my left has impacted everything ON THE LEFT….

BP goes so high that it’s heart attack range; with loss of weight unexplained and that’s what a specialist does? Oh he laughed at me being hungry too; even though I RARELY get hungry and was to see a dietician to help me gain weight FAST….. in the end I discharged myself and said I will go to another hospital. It’s CRPS being ruled in by ruling everything else out…. problem with that is they won’t ever treat my pain at the appropriate levels; so I’ll continue to lose weight and they’ll say it was heart failure that killed me or pneumonia; as Im prone to the latter and now do not have the weight to fight it and they REFUSE to give me vax on both due to my age….?!?!

Annette Croy

Medicare (and all secondary insurers) are going to strip you of your Meds anyway, WHAT ARE YOU GOING TO DO ABOUT IT? Are you going to really stay home, miss your chance to to be heard and continue to let this goverment strip you of EVERY basic liberty and human right you have???? I understand your fear and frustration, I do. But they ARE going to take your meds IF YOU DO NOTHING ANYWAY!! So really, even if you have to carpool, take a taxi, Uber, or CRAWL to get there, WHAT DO YOU HAVE LEFT TO LOSE?? You KNOW what will happen if you stick your head in the sand and do nothing. WHY NOT take the chance, no matter how small you may THINK it is, to CHANGE IT??? If we can all just DIG DOWN DEEP one last time for that last little bit of strength to get to this rally, I also predict that we can MOVE MOUNTAINS AND GET THESE LAWS CHANGED!! Again, WE HAVE NOTHING TO LOOSE!!
Please don’t take my post as a scolding or a guilt trip. I understand some really can not make it. How about if everyone who can’t make it would send a message to your State rally page. I’m going to ask my local organizer if we could set up a display of shoes, with the first name, last name first initial, city and State of all CP patients who are HOUSEBOUND. That might make an awesome visual for others to see our ranks are VAST!! SO, if you would like to participate but can’t physically make it, send an old pair of your shoes, nothing fancy, something that can be thrown out, with first name, first initial of last name, city and State. Let’s let them SEE what they are doing to us! PLEASE ask your local organizer on DPP rally site if this would be okay. God bless. United We stand…..Divided We Fall!!

Annette Croy

I’m pretty disappointed reading the comments on this story. Let me be clear, I am a chronic intractable pain patient myself. My meds have also been cut over 80% this year and I have been bed/housebound since February, 2018 when my PM doc surrendered his prescribing license. 3,000 other CP patients were dropped into the street at the same time I was with NO NOTICE, COLD TURKEY, NO TAPER, NO REFERRAL!!
Let me also make something else clear, I completely understand CP patients fear of participating in the rallies due to the very real possibility of retribution. We are ALREADY TARGETS EVERYONE!!! Pharmacists already announce our prescriptions to packed waiting rooms, require counsel with pharmacists regarding our meds (where pharmacists pull our prescriptions out of the bag, and procced to once again name our meds loud enough so everyone can hear), patients are ALREADY being followed home, robbed or attacked.
Starting January 1, 2019, Medicare is basically going strip EVERY patient of their meds ANYWAY!!! Go to CMS.GOV and read for yourself!!! Right now, as it stands, Medicare is saying anything over 90 MME will NOT be covered. I want you to SERIOUSLY think about the timing of this announcement (i.e, right before open enrollment and the November mid term elections). How convenient!! How many of you (besides our advocates, obviously) were aware Medicare was doing this. Right now political parties are waiting with baited breath to see what happens with the midterms. Now also factor in what is happening in Oregon with Medicaid right now. Do you REALLY think this is all just coincidence? I think not!
I predict that after the midterms, and it really doesn’t matter which party wins control of Congress, there WILL be a announcement that Medicare is going to amend next year’s coverage decisions to EXCLUDE PAIN MEDS COMPLETELY!!! If im wrong, I will eat my hat!! Swallow my pride, and apologize on EVERY Chronic pain Support Group Page I can find!! Think about it, NO ONE wants Medicare to rile the American public right before open enrollment and elections. After the midterms, I suspect probably around the last week of December, after open enrollment is finished, you mark my words they make the announcement!! What do you think gave Oregon the balls to shove through their complete denial of pain meds? I’ll tell you…they KNOW what Medicare is up to!!
So….the question is this: Given that there is a VERY real possibility that next year

sandy auriene sullivan

As Barbara had noted before me; as though reading minds – so many of us are too weak to attend. Would an advocate family or friend fill in for me? That’s the question Im asking.

My family support my right to have pain medication to cope with this level of pain. Or would my doctor and/or his staff be interested? They dislike what is going on as much as we do.

When they’re honest they tell you; sometimes they don’t have to – mine was raided and ran away patients. Then everything returned next day. The rumor mill here is it was billing related matters. Good doctors and their staff are our allies. Wish I felt the same about my pharmacist. She’s good and treats me decently but there’s a huge change in attitude about narcotics and she knows exactly why I need gabapentin w/pain med and anxiety med. Nearly have heart attack BP range when my panic peaks…. it’s horrible.

Things have to change; been trying for 8 years to stop this from happening to anyone.

Jessica Reible

this is a great way to be heard! this is our chance to turn this around! look for your local rally & participate on Sept. 18th. This will get attention.

Please do not sit and think “someone else will do it & I don’t have to go”. There is power in numbers! Let everyone see with their own eyes how many people are affected by this!!!

Heidi

Also hope to attend U of Washington rally!
This discussion needs to made with gov’t officials at ALL levels, especially states! Send statements, call your legislators! Attend meetings and hearings regarding policies and rules! Let’s get chronic, long-term opioid treated patients separated from the overdose madness! Until effective alternative treatments are available, and covered by Medicare and other insurance, opioids are the ONLY treatment that gives real and consistent pain relief. As pain patients, do we really care if studies done on rats &/or mice, not human beings, say opioids might cause slightly more pain, or be as effective as non-opioids? NO, WE JUST WANT SOME RELIEF, be able to function and have some quality of life! Get the CDC (who does not have any pain conditions except arthritis & fibromyalgia listed on their A-Z index) out of the opioid prescribing business! If they do not consider pain a subject worth mentioning, why are they setting guidelines for prescribing pain medication? Many questions, answers need to be made!

Barbara

This sounds promising but it’s hard to get my hopes up. Alot of pain sufferers won’t be able to attend these rallies because of disabling pain. The people who have had their meds taken away are in the same boat. I’ve been lucky so far but that could change at any time. If you put yourself out there and the wrong people see who you are, you could be in danger of losing your doctor and meds. Or if the wrong people know you have opiates, you or your home could be robbed. Incredibly frustrating. And will any of it make a difference anyway? Look at the rallies and protests in this country after the mass shootings in Florida. All those brave kids fighting just to be safe at their schools. Did anything change? No. I really hope this will make a difference. If I cannot attend my thoughts and prayers will be with those who CAN attend. God Bless.

TJ, Neldine; I sure understand where y’all are coming from. I’m in Oregon, where they’re about to enact a complete ban on ALL opioids for ALL pain conditions, no exceptions (for low income & medicaid patients, at least for now, which adds class discrimination onto medical abuse). I went with about 50 other CPPs to a meeting of the group proposing the idea a coupla weeks ago, & they at least agreed to put off the final decision (tho I have no real hope we swayed the final outcome).

I, too, have been dependent upon Rx pain medication for years to function, and could not have worked my last 2+ decades of employment without it. I have been treated worse than a drug-seeking criminal my entire adult life*, merely because I wanted some relief from the vicious migraines that completely laid me out, literally blinded & vomiting uncontrollable, up to 2-3 weeks out of the month…& that was long before surgery left me in pain 24/7/365 in 2001.

This entire national narrative is based –like so many national narratives these days– on complete lies, falsified ‘data,’ and a propaganda campaign. It is beyond infuriating to see the lies get repeated & reinforced ad nauseum. I have some doubts whether the pain rallies will do anything other than give a lot of sadistic bullies chances to abuse “lazy malingering parasitic addicts,” but am gonna try & go anyway.

My concern with all the rally ideas is, people are going to see relatively small crowds (given the difficulty so many of us have in getting around) & even the relatively compassionate/non-brainwashed will assume that not that many people are going to be impacted anyway, that it’s better that “a few dozen” suffer a bit than “thousands” die of ODs (they always ignore the fact that pain patients aren’t the actual problem anyway).

The whole thing is so freaking depressing. btw, there’s a great analysis of an article comparing this to the Tuskegee Syphilis study, at https://edsinfo.wordpress.com/?s=tuskegee

* at least the ACLU & social do-gooders try to fight for help & safe drugs & needles for noble & unfortunate heroin addicts; they won’t even attempt to help us, because we’re addicts who refuse to own up to being addicts, instead lazily insisting we have so-called “real” medical conditions. Woops, got on the rant-box.

I’m really loosing my confidence, that anything will change. As long as the Government is limping chronic pain patients together with illicit drug users. We have done nothing wrong. I take my pain meds as prescribed. Dr’s orderders! Now I get punished for it. Don’t know what life will bring.😢

Janice

Hallelujah! I’m so grateful that Claudia Merandi has gotten this ball rolling. I’ll be there for my local rally if I have to take a taxi!
I’ve been so frustrated and sick about what is happening to all of us fighting pain seemingly without representation, rhyme or reason. Thank you and I hope others will make the effort to help change this madness too.

Steven

If you are a pain med deprived person you are special. I wish you peace. Not even our families can see us in a desparate and pathetic fight for life ending in trajedy..

Ellen

I have tried the links both tonrallies and it says server can not be found Anyone else having problems with rally links??
I want participate if possible but need information

Ellen

All the severe pain we are trying to manage is because of incurable illness and that falls under palliative care Yes many years ago palliative meant same as end of life care/hospice I have read and looked and now it refers to incurable illness several common are named and you can be seeking cure at same time so definition has changed Palliative care can go on for years and it provides comfort pain control anxiety control symptom specific help Even in cancer care many cancer clinics introduces palliative care team even if cure is being the current goal
So all of us with painful chronic illness that is not going away meet condition for palliative care ( not talking end of life less 6 months)
But no one can put a random number of how much MME you can have if you meet palliative care based on new definition.
I hope to be able to participate September 18 This constant worry is not helping our illnesses.
Jeff Sessions would get and his relatives any pain medicine needed he would not need worry about take aspirin and be quiet.

Steven

Thank you Cluadia , No one knows what is happening to us.

Shelley

I am ever so thankful for this woman’s ability to get something like this started and will do my best to publisize these events and spread the word. U only hope something comes if this effort. The public is so misinformed about pain medication and so easily whipped up into a fear frensy by all of the overblown hype and faulty statistical manipulation by government and media. What is wrong with professionals in this country? One would think doctor’s would be speaking out in defense of real facts instead if jumping on the hysteria bandwagon, betraying their oaths and cutting their patients off of the medication they know us really helping them. I understand that the general public may be misinformed, but we have medical professors an doctor’s, etc., That know better, yet are remaining silent in the face of this massive injustice and abuse leveled at chronic pain patients who have nothing to do with the poor choices made by r recreational drug abuserss, but are made to pay the price. What is wrong with people in this country? Where has the compassion gone? And most importantly, since we know that the government does not care about drug addicts, what is the REAL motivation behind the whipping up of this anti opiate hysteria? Is the government in the business of heroin distribution? Are they trying to create more heroin addicts in order to sell more of their product? There has to be a logical explaination for this twisted situation, because we all know it isn’t that they care about saving the lives of junkies. If that were the case they would back harm reduction methods, etc., which they do not. Something is rotten here…..

Tim Harless

I want to know if you have heard that se is National Pain Awareness month and nobody knows or cares. Even these September rally folks seem to need to reinvent the wheel. Kinda but they are making a noise in September together…..totally awesome. But to the point…th ACPA has been yelling about September for years and not much public exposure. Partial to the stancev they take about being nonprofit and non political…..that being said…i am an Advocate for chronic pain patients and theacpa.org. i do what i gotta do so I’m an activist as well as an Advocate for the cpp community.

Jess Butler

I feel so strongly about this subject as a CPP that I volunteered to organize the Pittsburgh rally. There are so many misconceptions and myths out there thanks to PROPaganda, skewed statistics, and sensationalistic reporting. We have to set the record straight and gently, peacefully, and quietly show the general public that we are NOT addicts–we are just patients, looking for treatment and a quality of life.

T J

Tired of reading about and being treated like a suspect in a drug trial when going to the pharmacy and unsympathetic reactions from people, directly related to the negative talk about prescribed pain meds.Do they really think we as pain patients want to spend hundreds of dollars monthly to reduce our pain levels, only now to be force tapered into a barely efficient med level.All the Trumped up bull of reducing production amounts in exchange for votes from non informed public morons that insist we are all drug addicts who should follow Jeff Sessions tough it out and take an asprin theory, First of all if my pain could be controlled with over the counter liver killing poison,I would be extatic,and that level of pain ,would not even bother with because that would be a walk in the park compared to what I and fellow sufferers deal with thank you very much.Since this madness does not appear to be going into a healthy direction there are going to be another crisis on this administrations hands, mass depression and suiside level increase.Do they really think that we want to have to deal with all the baggage of buerocratic health care mediling interference,when we have the baggage of a miserable pain condition that could be helped,if you can find a doctor that has not lost conscious of their hypocratic oath and feel the pressure of over Zealous uninformed politicians and a kiss ass surgeon general,is he even a surgeon? He certainly doesn’t strike me as a competant caregiver,just another Trump lackey, and this country is supposed to be a leader in health care?Pity .

Neldine Ludwigson

Thank heavens that somebody’s got the ball rolling. I am hoping I will be able to join the rally at the University of Washington rally, but living with no pain relief is beyond my worst nightmare.