Rhode Island Activist Pushing Pain Legislation

Rhode Island Activist Pushing Pain Legislation

The Rhode Island House Health Education and Welfare Committee is considering a bill that excludes chronic intractable pain from the definition of “acute pain management”, for purposes of prescribing, administering and dispensing controlled substances by a practitioner.

Democrat Representative Gregg Amore of East Providence introduce the bill at the urging of Claudia Merandi, a Rhode Island woman who has become well known in chronic pain circles for her promotion of the “Don’t Punish Pain Rallies”.

A practitioner, in good faith and in the course of his or her professional practice 12 managing pain associated with a cancer diagnosis, palliative or nursing home care, chronic intractable pain, or other condition may prescribe, administer, and dispense controlled substances, or he or she may cause the controlled substances to be administered by a nurse or intern under his or her direction and supervision without regard to the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain.

Merandi recently testified before the health, education, and welfare committee.

“I knew things in Rhode Island were going to get bad, but I had no idea they would get this bad. The only way to protect the patient/provider relationship would be with legislation,” she said.

She credits social media with helping raise awareness in her state.

“Two years ago, when I created the Don’t Punish Pain Rally Organization, I was sure to tag Rep. Amore on FB every time an article was posted. Another time I created one post and asked people to share their stories so he could see the horror that was happening around the country.”

Last year, after Merandi met with the chief of her Department of Health, Amore helped get a resolution put through that would acknowledge pain patients need for opioid therapy.

“I had been hounding the ACLU for two years and up until three weeks ago, they told me they couldn’t support the bill. I was surprised when they testified on Wednesday supporting it.”

What happens now? Merandi urges people to submit testimony to the committee so the bill doesn’t die in the committee, which has held it for further study.

What happens in Rhode Island will be another interesting test for the chronic pain community which has been caught in the cross fire between federal and state government concern about opioid addiction and the treatment of chronic pain.

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Authored by: Ed Coghlan

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Shirley Siegfried

Claudia Merandi is a Angel to so many people in pain I hope this passes it’s no way humane to make people in pain suffer more to a point where they become bed ridden die or commit suicide people in pain need their medications ASAP they suffer way too long

“excludes chronic intractable pain from the definition of “acute pain management”
This is like saying someone is pushing for legislation for a definition of “human” that excludes orangutans. How freaking messed up has this country gotten that “chronic/permanent/intractable” pain can’t be differentiated from “acute” pain?!

Further newsflash: a cold isn’t the same as The Black Death. Stop the presses & notify the legislators. Sheeeeesh.

Darlene

I do not understand how the war on people in pain can continue, despite understanding our rights under the U.S. are being violated every day. We have a right not to suffer in pain.

A few other other things come to mind when questioning this unjustice. Pain medication helps people in pain. What does tobbaco help? How many millions of people get sick, disabled, or die evreyday from first and second -hand smoke, and how much does this cost NY, and every other state in America? There does not seem to be a good reason that tobbaco should be legal, yet it is, and this habit is very expensive, and addictive, and dangerous.

Then there is alcohol. Another addiictive substance that sickens and disables millions of people everyday. Instead of limiting access to alcohol, it has become exeptable to advertise alcohol on television, and make it look quite glamorous. In my state, laws were passed allowing stores and establishments to sell alcohol earlier, and easier than ever. Alcohol abuse often affects innocent people, and in very bad ways.

One last comment here includes gambling. Another serious addiction that can negatively effect, not only the gambler, but every aspect of the gambler’s life, including family and society. So why has gambling become one of the most advertised ‘fun, legal, and easy’, way to have ‘fun’? Gambling can also be an addiction, and a avery serious one. It can rip families apart. Lives are lost, and people can often lose everything due to gambling adictions.

So what does this say to addiction, law and justice, in America? Not everyone is addicted to tobbaco, alcohol, or gambing, among other ‘legal’ habits, but many are, and the results can be devestating, for everyone. Why sould pain medications be targeted for addiction concerns, yet other things that affect society in general, in ways that have been proven to injure, kill, and mame, so many people be portrayed as legal? Pain relief is a right, and rightfully so.

Judy

We need more angels like Ms Merandi fighting for chronic pain patients. Thank you!

Lin

Time to start letting this country hear our voices. Time for class action lawsuits. Of all us pain sufferers out there someone must have a lawyer in the family willing to take our case pro bono (free) ? WashDC has no idea WHO we all are. I’ve been told by my brother in law that the VA is doing the same thing to our vets! It’s become crazy. Only time ANYONE will take us seriously is by making noise. Suing makes a huge noise. I’ve been cut off my meds cold no tapering, blindsided. We are American citizens and entitled to “Happiness” if this means meds to function. Other countries don’t treat their citizens like this. I’d like to hear feedback.

Mona

I don’t think people who have never experienced pain should be able to stop those who prefer to have stronger pain medication. Pain medication allows me to do a chore, read a book,visit family. or just have my pain level to drop a little

Mareaeric Campagna

I am extremely grateful for Claudia Merandi and her involvement in helping to get this bill introduced that would put so many of us that have been suffering with relentless pain for years in a different category than acute pain.
We must use our voices to make change happen, so lives are saved from suicide, and people will be cared for properly for their individual pain needs, and not punished and degraded for something that cannot be helped.

Jean Smith

I had a double compound fracture of the tib-fib, non union which means that my foot met my knee and in the process of trying to get up, ground the bone down 2 inches. I’ve been through 2 sets of plates and screws, multiple (8 surgeries going through the same scar tissue) surgeries for infection and an iliac bone transplant. Spent 10 years in an afo type brace in wheelchairs, walkers, crutches and arm canes.

Good news is that I am not an amputee and I can walk unaided.
Bad news is that I seldom want to walk. I’m tired of hurting. I’m tired of going to work hurting. I’m tired of hurting so bad on the way to work that I’m crying and nauseated. I’m tired of hurting so bad after work that my body responds with nausea and diarrhea. I am tired of hurting!

I can get on disability, food stamps and medicaid. I can get on assistance for basically the rest of my life with no problem. I know because I was on assistance and became tired of just existing. I wanted to work. I wanted to get off assistance. I enjoy my work.

I’m tired of the crying, nausea and diarrhea just because someone who doesn’t understand chronic pain made a law and terrified the wonderful physicians who only want to help.

There have been times that I thought it would be easier to crash my car, take OTC sleeping pills or whatever to end it but I haven’t because I am going to fight this law. I don’t want this law to be the cause of another person’s agony.

I’m tired of hurting.

I have the prescription creams, spinal stimulator and the non-pain relieving pills. I do all that I’ve had the needles in my spine and my ankle. I know that the pain will never go below a 3/4. Just let me get to a 5 and we are good. Living at a pain scale of 7 or higher isn’t living. It is torture.

I am tired of hurting.

Pat

Someone needs to help the pain patient now

donna

Timothy said it…what do the law abiding citizens do? Those in power can’t stand the public show of egg on their faces because of billions wasted ineffectively trying to stop illegal fentanyl imports. That is the true problem, not the patients who have years of records showing they are injured and can’t be fixed, and nothing can be done but manage their pain. Cutting off these patients only creates a larger burden on the system because once productive people are now bedridden and unable to support themselves and their families because they cannot function.

This is like punishing the child because their mom is a drug dealer. Chronic pain patients and the doctors who try to help them are being punished because the dea etc can’t do anything effective about the flow of the illegal stuff that’s what is the real problem.

It’s right up there with punishing the dog because the cat knocked the biscuits off the counter and the dog ate them. Makes no sense.

LYNDA LUTZ

Know about chronic pain And sometimes family and friends! When are all these people going to give us a break? We do not get a high or sell our meds or give them to others. We should not be punished in any way by punitive a ction from Congress. Doctors are scared as are pharmacists. Some of these same people try to tell us it is the law making them do that. That is not always the case. Corporations like Walgreens make their own rules. My doctor knows what is going on. Do I have to give this whole diatribe to every pharmacist and pharm tech? I think not. Last month Walgreens once again acted stupid. They said they have to call my pain doctor to make sure it is okay to give me a sleeping pill and a narcotic It was not anything new. I said that my doctor scanned it over to them. I think he already knows.
They said they just wanted to make sure. I told them to call him then because it was time I could get my pain meds and sleeping pill. I just cannot stand ignorance from supposedly educated professionals. As the saying goes, ” you can’t cure stupid”. That is my rant for today. Just a note here. Pain patients all over this country are either lying in severe pain, getting pain relief from illegal substances, or are committing suicide. Something I have been saying for years I read on the Internet yesterday. People need to take some personal responsibility for what they put in their bodies. Along that same note, addiction is a disease and our health care system needs to step up and help. This making narcotics harder to obtain drives addicts underground more. That in turns enriches cartels supplying dangerous drugs, not meds, to people. No one mentions that last part. I hope I have helped people understand the chronic pain patients And what we need from everyone
If I can do anything to help out anyone, let me know.

LYNDA LUTZ

I am a chronic pain patient in Southern CA. I have insurance called Tricare for Life which h is military. They decided three years ago to switch my pharmacy from CVS to either Wagreen’ s or Riteaid. I had been at the same CVS since 2006. I was not a happy person. I am 72 years old and I am a retired RN. So now, Walgreens is giving me the hardest time about the narcotics I am on and if I needed to get them two days early. Their rule, not mine about being able to get them two days early. It was hard enough finding a reputable
pAin doctor now I have to practically beg for my meds from Walgreens here in Irvine. If I have pain accerbations, I tell my doctor as I did yesterday. I have severe Osteoarthritis with spinal Stenosis. I had a swimming accident that caused this. I had to retire three years ago from nursing because of this. Financially, it had been rough. On top of that, I got a blood clot in my leg that goes from my ankle into my pelvis. This was a year should. Since then, I had many hospitalizations due to cellulitis and swelling which leads to leg ulcers. I was on Xarelto until two weeks ago when Walgreens transferred it from the military at Camp Pendleton without my permission. I have been with this medication for two weeks now. I could throw a PE or stroke out thanks to them. I cannot get anyone to answer at the pharmacy at the base and Walgreens will not transfer it back. Now, I am going to detox off my narcotics and be in more pain thanks to Walgreens. My daughter went in to get an Ativan order of four pills so I will not detox as hard. They were whispering that I got only the Ativan and the Neurontin for the increased firing from nerves in the leg with the blood clot And ulcer. I cannot financially afford the other meds right now. I get paid next Monday, once a month. The pharmacist was whispering to another pharmacist how I only got those two meds. I cannot stand all this judgemental crap. We chronic pain patients get it from legislature, doctors who

Leslie Meadows

Can’t wait to see how fast & smooth it goes in Rhode Island. I think somebody’s been reading my mind or my dreams🤯

Jeanette French

My email to my Senator and congress and the attorney general, please do the same, HELLO; Rhode Island House is putting forth a bill now, it is called Bill 5434, Can you please put this forward in our State and do it now. It is well written and says what needs to be said and changes what needs to be changed.
PLEASE SUPPORT THIS BILL ASAP, PATIENTS TAKING THEIR LIVES NOW AND IT NEEDS TO STOP.
This is the link to the bill:

https://legiscan.com/RI/bill/H5434/2019

Please do not hurt pain patients anymore, we need opioid therapy as much as anyone with acute pain, it works for us and makes us be able to have some quality of life and some ability to function and even work at times. It does not make us high. That is not our objective, just pain relief. Please support us in stopping anymore horrific consequences, such as the taking of lives due to untreated or under treated pain, from the cdc guidelines and also protecting pain doctors from being terrorized into literally walking away from treating their patients,and patients being flagged, and the doctors receiving warning letters from the FDA when they prescribe over the cdc guidelines for any patient, which were supposed to be voluntary, but have become mandatory, and please make it mandatory that all pharmacies have to fill legitimate prescriptions and can not black list any doctor who writes opioid prescription in good faith.This comment by Claudia Merandi, says it all:…A practitioner, in good faith and in the course of his or her professional practice, managing pain associated with a cancer diagnosis, palliative or nursing home care, chronic intractable pain, or other condition may prescribe, administer, and dispense controlled substances, or he or she may cause the controlled substances to be administered by a nurse or intern under his or her direction and supervision without regard to the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain…………..Please do not hurt us anymore, we can not take it,

William Buzard

sorry:-( I didn’t read the whole thing through. it looks like they do know what they’re talking about.

William Buzard

who are these people? What in the blank blank did they know about being in pain? I’ll bet nothing.

I loathe the idea of legislating medical care (or refusal of medical care, in the case of pain patients) anyway, but the fact that we need legislation that defines that “chronic” is not “acute” is surely proof of how stupid, ignorant, & hysterical politicians & the public have become on this subject.

Lynn Marie

Being out in nature and or with animals heals and helps.
Loud commotional and crowded environment makes me worse. Brings on anxiety.
It’s a difficult balance using enough pain meds to help or too much to feel out of it, fatigued and unable to think clearly.

Amy M Zolondek

Pretty cool to hear. At least it’ll be a start. Those of us with chronic progressive diseases such as myself w/Progressive Multiple Sclerosis, need to be protected. I’m one of the only patients at my pain clinic who receives the max daily dose. Its sometimes not enough. I was used to me & my doc discussing my flare ups and adjusting my meds accordingly. Now, hell, I get what I can get. Its total [edit] what the CDC did.
I’ve been saying from the beginning, its from the illegal fentynl pills idiots are ordering on line.
NOT Opiods given in Rx to a damn patient.

Voakley

Hope, hope that this trickles down to Florida. What they are doing is so bad to do any where, really, Tens of thousands of people retire here. Live to play the beautiful golf courses. Most whom have lived an active lifestyle but are now suffering from the stress and strain that is put on the body throughout life. This state has so many different types of activities and sports. It is impossible for every single human in the world to not sustain any life altering injuries, or born with them
I will be calling from morning to night April 1, to the Florida representatives.
This cruel and it has to stop. Doctors afraid to stand up for the patient. Pharmacists not being able to help. The small pharmacy business owners are being bullied and regulated to death. The employees who are in every part of this process are going to end up in a bad situation. Jobs, families, individuals who are in the fields that keep people fed, etc. Are paying the price for the irresponsible actions of people with a mental or a deep seeded issues. A family history of addiction and whatever else they want, need or crave can not be put on all Americans.
Agony and suffering is running through Florida. For what? Some people who just did not want to live. STOP PUNISHING US ALL.

ElizabethR

Three cheers for Ms. Merandi and Rep. Amore!! I wish I were more social media savvy, but at 82 I’m of a different generation. I send emails and use FB occasionally but I’m not very knowledgeable about smartphones, text messaging, etc.

I totally agree that politics and the practice of medicine between physician and patient do NOT (or should not) mix, and I hope this potential legislation is successful. If it is, it could serve as a model for other states.

This whole thing disgusts me. I’m a chronic pain sufferer for 10 years and the only thing that keeps me alive is Lyrica for my nerve pain and Norco for pain. I just had the Nevro stimulator removed …..this was the worst thing I ever did was to have this implant. I was in my surgeons office and ran into the west coast manager for Nevro and he said if I was his patient from the start he would of never recommended this thing implanted in me since my back after 13 surgeries.

F.S.T.

It’s truly refreshing to know that Rhode Island is getting it right. My fear in my state is that the damage has already been done. Many doctors retired when this opioid debacle gained momentum, because they knew they would have to choose between providing good medical care and possibly losing their licenses. The ones that stayed in are unwilling to change their new prescribing practices, citing their unwillingness to get on the regulators’ radar, no matter what the patient is going through.

It is so discouraging, but I’ve renewed my commitment to live one day at a time, regardless of what the State is telling doctors.

James McCay

It’s great for these OTHER states who have politicians with brains like Rhode Island. But what happened to the biggest city in the country NEW YORK CITY?
We have politicians who first watched ALL Agencies (that had a clue what they were doing UNLIKE Adult Protective Services aka APS) for the Physically Disabled and Disabled Elderly DISAPPEAR from 2010-2015. The Medicaid was completely broken in NYC by 2015 as well ignoring the plight of the homebound elderly/disabled. It’s our USELESS Mayor Di BOZO & Governor Cu-OH-NO, has to be! Yet they keep getting reelected which proved to this 52-year old man that POLITICS ARE TOTALLY FIXED!

Then by 2017, they allow every Pain Management doctor in NY State to REFUSE SERVICE to Chronic Intractable Pain patients MORE THAN ANY OTHER GROUP??? Why, because we are mostly homebound and cannot fight face to face with our useless politicians. They can & DO HANG UP ON US! Since our phones are our only way of asking for help. Then they allow every 10-year or more Chronic Intractable Pain patients who NEVER got “high” on their opioids, because when you have EXCRUCIATING widespread pain, opioids ONLY lower the paion a bit, it doesn’t have any strength left to make us “high”.

In NYC, we were the 1st group who had our long-term use of opioids to keep us from KILLING OURSELVES because we cannot handle non-stop “10 out of 10” pain- after our Pain doctors became so scared by the DEA “Guideline” letters. I have a 130 IQ and last time I checked “GUIDELINES” meant “with the aim of guiding, or helping make decisions”. Yet nearly all NYC Pain Management doctors got SO SCARED that they ALL lowered our long-term opioids for Chronic Intractable Pain by 10%-30% (or more) ONLY to make themselves feel “more comfortable” completely ignoring the HIPPOCRATIC OATH!
THIS IS NOT A MISTAKE! This is an organized attempt to KILL OFF as many Chronic Intractable Pain patients as possible which is A CRIME!

NY STATE: FIX THIS CRIME! OR FACE PRISON…

Rosalind Rivera

As a chronic pain victim is say “ KUDOS” to someone who FINALLY recognizes what we go through each and ever second of our lives! More in control and power need to follow this persons lead in the fight to liberate us chronic pain victims from the binding chains of those in power that presently comprise a dictatorship in the war of depriving those such as myself from therapy, namely pain medications that make our daily lives more bearable!
Rosalind Rivera
Lucerne Valley, Ca.

Patricia

Hello,
I’ve been a Chronic Pain Patient for 20 Years, and although I’ve been thru times where Pain Dr’s have been shut down in the past in 2003, this has been much worse ! I believe that when the Media tells of Drug Busts or Unfortunately Drug Overdoses, that they Must Not Simply Put All Drugs Under An Umbrella Terminology, such as “Opioids” , this Terminology alone, has wreaked havoc on the Chronic Pain Sufferers ! The Primary and Majority of the Drug Busts and the Drug Overdoses have Always been Due To :Heroin & Fentanyl, Period ! Yet, the Media and Politicians, and the Government Agencies have the whole World of Chronic Pain Sufferers turned Upside Down, to the Point Of Being Inhumane, pushing those who were once able to function and lead relatively normal, as possible Lives, With Prescription Opioids, Into Suicide !!! Nobody can understand the Excruciating Pain that a Chronic Pain Patient Suffers, Unless they too are a Chronic Pain Sufferer, and this Includes Dr’s of all Pedegrees,
ie…MD , DO, Holistic, Psychiatrist and last but not least Psychologist ! I can Only Pray, that Rhode Island Will Set A Precedence for all the Millions of us who have been made to suffer, due to the Umbrella Terminology of Opioids !
Thank You for the opportunity to speak my thoughts!
Sincerely;
Patricia

T. Negrete

The State & Federal Governments of this Country are going to talk, talk, negotiate, talk, talk and more negotiation. They talk and negotiate while Chronic Pain Patients are committing SUICIDE. It is a real option! Taking opioid medication of the market has opened up new avenues of making $$$ off the suffering of the most vulnerable parts of the American Society. These Government people don’t care! Psychopaths, with no compassion or empathy!

Gary Raymond

Nice try. Thanks. The only solution is to remove politics from medicine. Those suffering from chronic pain should not be subject to the experiments of 50 states. Lawyers are self-regulating. Doctors can be too. Unless, the lawyer concept is failing . . .

Terri James

I thank God for people like Ms.Merandi. Here we have one woman who refused to give up, by her sharing others nightmares it seems she may have lit a fire. That’s the point I was trying to make when Mr. Lawhern urged us to make phone calls a couple of days ago on April 1st. By now we all know he’s a very brilliant man and would not give advice that would be detrimental. The more we can do, the more we pray, the better. I realize it seems as though we’re fighting an up hill battle for we have been. We can’t give up though. I’m so very thankful we have people in prestige positions that are willing to help us. I for one send a heartfelt thank you to all of them.💞

After 5 years of chronic back pain and receiving Hydroco/APAP, My DR. Has decided to take me off my pain meds. I have already had physical therapy, tends unit, shots in lower back, seen a surgeon and none of those relieve my pain. I fear I will go back to alcohol or whatever it takes as I want to be a functioning member of society but with the MISSOURI laws I will no longer be able to mow my lawn, fish out of my boat, ride my motorcycle or possibly work. Where are us law abiding citizens to go without the medication we need???