Don’t Punish Pain Rallies to Surface Again in October

Don’t Punish Pain Rallies to Surface Again in October

The Don’t Punish Pain Rally Organization has scheduled another series of rallies across the country. This will be the fifth rally it has sponsored. The goal to drive awareness of issues facing the chronic pain community, notably the access to opioid medications.

The next date for the rallies is October 16th, 2019.

“We are making progress, albeit slowly,” said Claudia Merandi, a Rhode Island woman who organized the group with the goal of creating more media attention to what she calls “the other side of the opioid story—the fact that many patients use them responsibly and need them.”

The rallies are an opportunity to educate the media and by extension the elected leaders about the crisis facing chronic pain patients.

Merandi says her group has been mobilizing more doctors to speak out.

“Working with doctors who have been terrorized by the DEA is a major part of the pain patient equation. When the DEA seizes doctors’ assets, there’s a whole lot of money to be made and that is the root of the pain community’s problem,” she said.

Merandi believes the only way to fix this problem is with the Congressional hearing looking into the behavior of the DEA and also having the Controlled Substances Act amended. She says her team has been growing and their efforts are helping convince more elected leaders to listen.

But when asked why more progress wasn’t be made, she said, “Too many political leaders consider coming out for a more reasonable approach to opioid prescribing as political suicide.”

Merandi has introduced legislation in her native Rhode Island Legislature that would protect chronic intractable pain patients. They’ll try to get the Senate to pass it next year after getting House approval this year.

Merandi’s Rally Talk show with Claudia is starting to develop an audience.  She interviews doctors, lawmakers, lobbyists, in an attempt to combat the pain patient suffering.

Here’s a link to her broadcasts.

Merandi believes that the efforts of her group and others in the pain community are getting the pain story out, although slower than most would like.

Public rallies, information sessions for legislators such as occurred in California last week, and working to increase media coverage generally to inform the public about chronic pain issues are critical to educating people who can help chronic pain advocates change the narrative.

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Authored by: Ed Coghlan

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Angie H

I have been forced to get the med to counteract overdose even though my pain management doctors left the decision up to me the pharmacist made me get it than still refused to fill my prescriptions. I pay out of pocket for my prescriptions. The prescription for overdose med costs for 1-2 doses $150 that is with discounts, for something that is going to sit on a shelf for a yr and thrown out and have to renew for another year.
Now my prescriptions that have been running around 45-50 (with discounts or less) are now $145 and there is no explanation as to why. This is one I have been on for 9 yrs since getting CRPS from a iv that went badly. I lost the use of my right hand and wrist and arm 9 yrs ago. Lost my career and how I had to do things. Now it goes to the back and ribs on the right side and left leg from knee to foot. Thanks alot for (I am sorry) screwing me over again.

CJ Caddell

I live in Kansas, I am sick and tired of the pharmaceutical companies being blamed for the opioid epidemic. The ppl who are overdosing have a choice as to how much of the drug to take.
The ppl that have chronic pain aren’t being able to get the meds they need because of the doctors being to scared to write a script cause they are scared of losing their licenses so some ppl are turning to other ways to get the pain meds they need !
I have chronic back pain caused by Degenerative Disc Disease, have a implanted nerve stimulator, numerous injections, and I am suppose to allow 30 pills last 6 months. Guess what that’s not happening and there is not a damn thing I can do about but suffer in silence til I can get a new script for my opioids every 6 months.
I am blaming the ppl who have overdosed because they knew better and now they want to blame the pill makers??? They make the drug, NOT sell it to individuals..
I blame the ppl who make pills in the back rooms and lace them with crap that actually DO kill ppl, so why not go after them alot harder than they do?
If I have offended anyone I apologize. Just would like to get scripts to last more than 14 to 20 days outta 60 days

Randy

Yeah it’s political suicide for politicians tri use their minds and mouths on topics that they railed against when getting elected. Especially when they were wrong. Let them feel tge pain like us chronic pain patients a…

Kimberly Fox

I don’t know about other states, but here in UT, if you sign up for the suboxone “program”, you are admitting to having a “problem” with opioids and you will never be able to receive them for pain. Be informed before you sign ANYTHING. I refused and chose to suffer through withdrawal. Do not allow this system to profile you!

Lisa

Will there be rally in Maine

Gail Honadle

We still have 51 sets of Pain Laws to over turn or fix. 50 states and 1 federal. Let the Light of the Lies SHINE. This also includes the Snake Oil, the subs for pain that don’t work, and are addictive themselves with horrible side effects. Drugs that KILL. Damage Hearts, lungs, livers, kidney’s, why are Black Boxed drugs that say they cause Bone Cancer on the Market?

Prescriptions Aren’t the Problem

Doctors over-prescribing opioids did not cause our drug crisis. According to CDC’s data, nearly half of all overdoses don’t involve prescribed opioids at all. Among the remaining drug-related deaths in 2017, half involved illicit fentanyl and heroin. Only about 18,000 deaths involved a prescription opioid, and most of those also involved multiple illegal drugs and alcohol.

The National Institute on Drug Abuse says most addicts begin to abuse drugs in their teens or early 20s. Contrast that with pain patients on opioid therapy, the majority of which are over age 55. Seniors are prescribed opioids three times more often than youth under age 18, yet somehow seniors have the lowest overdose rates of any age group, and youth overdose six times more often. Prescriptions aren’t the problem.

Restricting pain medication to pain patients won’t stem the tide of illicit fentanyl and heroin overdose deaths. Forcing pain patients off the only medications that work, providing no alternatives, and driving those same patients to street drugs and, increasingly, to suicide won’t help either.

Lawmakers must direct their attention to the real problem–the rising tide of illicit street drugs–and stop persecuting pain patients, the most vulnerable among us.

Rhonda Johnson

Here’s another issue that’s been caused by this whole opioid epidemic dot-dot-dot my pain clinic was shut down 4 months ago with no warning and left 2,000 patients to scatter for help we were told to go to our primary care physicians for to the ER and let me tell you I made more than 6 Kohl’s to anyone that would listen and I got no help whatsoever. And then someone told me about a methadone clinic they have also a suboxone program which I chose to help me with the withdrawals from the opioids that I was used to taking for my 4 chronic pain diagnosis. Pain clinic opened up a few weeks back and was overwhelmed with patients obviously but was told that because we had sought addiction treatment that the powers that be would more than likely kick us out of the pain clinic a week later a letter arrived saying that that is exactly what happened so once again we’re left with nothing it really seems like nobody cares and it’s very sad I’m a working mother at 5 I have a full-time job plus overtime hours at least once or twice a week and the only way I can function is with pain medication the only alternative is the Unspeakable…. please someone hear us!!!

Debra Aellig

We are grateful to Claudia Merandi to have founded DPP. We now feel less powerless over this ridiculous government overreach which is harming millions of people in pain and the DEA is ruining the MD/patient relationship.

Eddy HAYNES

As much as I firmly believe in social statements and respect those capable, I must remind those powers that be, most of us without any medications can’t rally. We’d love to, but being stuck without a great deal of mobility means we aren’t capable of doing activities of daily living without help. Some times a lot of help. We’re stuck either dragging our families into assisting us or hiring strangers. I recently had a great deal of my valued collectibles stolen by one such hired help. Now, I can’t allow anyone in my home. Being disabled because of misinformation, misdirected do gooderness and incredible ignorance is just another government meddling extreme. No wonder doctors are leaving their professions in droves. Who wants to go to jail for helping their patients? I don’t believe I’ll be around long enough to see the swing back to sanity. Myself and many others aren’t going to keep fighting. I was recently asked to define pain. That’s easy, brain melting inability to see, hear or think beyond the sharp insistent stabbing. (Use whatever visual damage or injury you’ve suffered instead of stabbing and maybe you’ll get a brief glimpse of the pain in my world) I am wishing all of you the very best. Unfortunately, I think I’m about done.

Susan

How do you get a picture of the MD you are seeing. I went to a pain specialist. She had been off for several months due to illness. She looked entirely different from the first time i met her. She look 20 yrs younger and had a completely different personality. I cant find her picture on any website. I’ve looked on the website for her practice, AMA, TMA. NO PICTURES. How do I know who I am really seeing?

Judy

Is there anything happening in Birginia or Washington DC?

Janelle Dalstra

All of this is good and important, but what needs to be addressed I think, is the government isn’t in agreement with itself. LARA stated in there posted (QUESTIONS AND ANSWERS) that chronic pain patients weren’t apart of the new regulations and restrictions. But the DEA is still going to doctor offices and harassing them to follow the new Opioid dose requirements. If we can’t get the government to agree all these rallies seem pointless because there not listening.

Rosalind Rivera

Kudos to Miss Merandi!
This is a start although as she points out, with very slow recognition. The DEA should no longer control this sector of Pain Management as it obviously has no clue of what we, chronic and intractable pain victims are suffering on a 24 hour daily basis. I reside in Lucerne Valley California, a small town where nothing ever happens, however, even though most days I can hardly get out of bed, if a meeting or rally was to come near me, I would absolutely get into my wheelchair and make my way there. By the way, I wasn’t using a wheelchair 3 months ago!

Walter Gaskill

Good luck to Claudia trying to get ANYTHING passed in Rhode Island. You have my full support but very skeptical of the RI legislature

Janet S. Flowers

Where’s the rally? Are there any in Orlando, FL?

Cher Downs

Schedules, places of local rallies?

Deanne Daniell

There is one more big part of the opiod “epidemic” hysteria …. the ADDICTION TREATMENT INDUSTRY! Ever wonder why you see so many TV ads for Addiction Treatment Facilities? By the last figures I saw, insurances pay UP TO $36,000 for in-patient treatments! Doesn’t take a lot of patients to add up to MEGABUCKS!!!!! And that kind of money BUYS CONGRESSIONAL INTEREST!!!!!

Max Beichert

It’s too bad that the founders of this worthy organization didn’t consult with marketing professionals before coming up with the branding of “Don’t Punish Pain,” which makes it difficult to put a “human” face on the mission. It’s not chronic pain that’s suffering; it’s the people. There could possibly be some risk in forgoing some of the momentum gained thus far in the program, with a name change, but it would be vastly more worth it in the long run. It’s not unlike running a political campaign; in fact, that’s exactly what it is.

cheryl fox

Where is the rally?

James McCay

It’s good that able bodied people can “rally”, but I’m fairly certain that many on this board don’t read posts like this because; WE CAN’T EVEN LEAVE OUR HOMES TO GET GROCERIES & many (like myself) have NO HELP! I know I haven’t been able to go “out” since at least 2009.
Then people who see “relatively healthy people” (IN THEIR UNEDUCATED MINDS) at rallies and they feel “If most of these people can stand/sit all day at a rally, how much pain can they be in?”.

I know how the IGNORANT think, as I made that my 2nd (non-paying) career in 1992: fighting autograph forgeries & ILLEGAL sports card sales. From 1997-2004 I had my own website and used to do hundreds of in-person interviews (all on my site) & I put many BAD dealers & Card Companies OUT OF BUSINESS forever!

By 2004, I started having such severe widespread pain & fatigue that I could no longer travel, nor could I do phone interviews, or often just think! Let me tell you; Myasthenia Gravis is one SOB of a disease (add Degenerative Disc & Fibromyalgia and your life as you knew it is OVER!). So I spent the time I could adjusting my day by day life; which took TOO LONG and hurt me SO BADLY because- that took away my time from fighting hobby fraud.

These hobbies became SO AWFUL as I rearranged my life!

Then as a Permanently Very Disabled man, I became a hobby joke to some; especially by those I busted for fraud; ripping off MANY collectors (hurting children bothered me more than anything; crooks are NOT PICKY!). So the young 20-30 year old sheep followed these IGNORANT CROOKS & became crooks themselves because the years of hobby fraud without ANY policing created a VOID, THAT NO ONE FILLED w/out me! Gulit, guilt, guilt…

That face picture in the title is what my face looks like most of the time, YET NO ONE KNOWS I’M IN PAIN??? This is how IGNORANT these healthy people are to pain! THIS MUST END!

Jandriene

Thank you!!!! This is very positive, moreso than all the alphabet agencies’ recent letters/amendments/etc that seem to do nothing/made no change.!!!!!!.
It will take time for Don’t Punish Pain to make dents in the hypocracy.

Claudia

Claudia is awesome .. We never have enough people in Illinois we didn’t have a Rally in March I am waiting to see if we will have one here in October .Already ordered my shirt .. I was passing fliers ECT ECT …I know many can’t are bedridden .also it’s getting harder for me w my onset problems BUT I WILL BE THERE .BACK TO THE GYM I GO PT I FEEL MAKES ME WORSE .. I CAN WALK BUT NOT AS MUCH AS I DID .TO MANY SURGERIES AND NOW DAMMM ARTHRITIS MY BACK NEEDS THE SAME 1ST SURGERY I HAD BUT I AM FIGHTING FOR MY LIFE