"We are taking on this fight for you. I've heard your voice and I've put it into the briefs we submitted." ~Atty Ron Chapman

We posted an article last week about the Supreme Court case coming up on March 1, 2022. On Jan 4, Claudia interviewed Ron Chapman, who submitted an Amicus Brief in support of the doctors in this case.  Ron broke it down for us explaining what this means for CPP's and doctors. Listen to the interview to find out what Ron thinks the best and worst case scenarios are depending on the outcome of this hearing.

Summary of the issue

• Under the Controlled Substance Act (CSA), the criminal standard for prescribing says a physician can't prescribe outside the course of professional practice other than for a legitimate medical purpose, When a doctor elects to prescribe a medication, he needs to make sure he establishes a physician patient relationship and that the prescription is for a legitimate medical need. That should be the extent of the discussion. Courts should not debate about whether it's the right or effective treatment. All the court should ask is if the doctor was acting like a doctor and if he was, then it should be done, acquitted. No conviction.
• Over the last ten years the federal government has decided to crack down on opioids. They took out pill mills because there were bad doctors. So they hired a bunch of prosecutors and DEA agents, and they started going after these doctors. Once the government ran out of nails (doctors) to hammer and already had all these hammers (DEA agents/prosecutors), it needed more nails to go after. So, they started asking judges and juries to decide closer and closer calls in the practice of medicine, so more doctors would be caught up in its net. This started around 2011.They hired experts to get on the stand and say "here is what the standard is, and if you don't do what I think you should do then you're committing a crime." They got on the witness stand and started spouting their theories of what doctors should and shouldn't do.
• In 2016 the federal government decided to take these theories of expert witnesses and they codified them in the CDC Guidelines. Now federal courts are using the Guidelines to convict physicians. The problem is there is no consensus on how a physician should prescribe, it's patient specific and can't be reduced to these ideas. The idea that it can is nonsense.

AMA (American Medical Association) has been vocal about their view of the 2016 CDC Opioid Prescribing Guidelines and the changes they feel are necessary. On September 21, 2021, AMA released a report showing that while there has been a 44.4% decrease in opioid prescribing, the drug overdose epidemic has never been worse. The press release for the new report can be found here. The report also discusses how as PDMP use has greatly increased, overdoses and deaths skyrocketed.  Does that mean the PDMP actually increases deaths?  It's possible. This issue is discussed further in this Reason article by policy analyst, Jacob James Rich. The DOJ has put hundreds of millions of dollars into funding the PDMP. Will they stop funding the PDMP since the results are definitely less than impressive? Doubtful, but we'll see. Contrary to what anti-opioid zealots like Andrew Kolodny from PROP and Gary Mendell from Shatterproof want people to believe, AMA President Gerald E. Harmon, M.D. said “The nation’s drug overdose and death epidemic has never just been about prescription opioids.” 

Truth Out published an article on October, 1, 2021 regarding the DEA's recent public safety alert about the abundance of counterfeit prescription pills. Mike Ludwig's article is part of the series "The Policing of Pain: Inside the Deadly War on Opioids." This increase demand for prescription pills is largely due to a crackdown on prescribing of controlled substances. Mike explains that the link between "overprescribing" and the overdose crisisis greatly exaggerated, citing the fact that opioid prescribing has plummeted to the lowest it has been in a decade as overdoses have skyrocketed. Claudia Merandi, Founder and President of The Doctor Patient Forum, was interviewed for this article.

Where is the Abandoned Patient and Forced Opioid Taper Questionnaire?

How can I sign up to receive The Doctor Patient Forum's free newsletters?

How do I advocate for a loved one who is in the hospital?

How do I file a complaint about a civil rights (ADA) violation?

How do I request my Electronic Health Records and what do I do if there are errors in them?

What is NarxCare?

What do all of the abbreviations and acronyms mean?

What is the PDMP?

Is there a list of up-to-date statistics, research, and studies that I can use to show to media, my legislator, or my doctor?

Did the CDC know their Guidelines could potentially harm patients? Were they warned?

Do studies show that prescription opioids don't work for long-term chronic non cancer pain?

What is the SPACE Trial and does it prove that prescription opioids don't work for chronic long-term non cancer pain?

What is MME? Are the concepts of MME (Morphine Milligram Equivalent) and MME limits such as 90 MME, based on solid scientific evidence?

What are the 2016 CDC Guidelines? Will the updated CDC Guidelines make things better or worse?

Did The Doctor Patient Forum submit comments to the docket for the updated/expanded CDC Guidelines?

What is ORRP (Opioid Rapid Response Program) and do they actually help abandoned patients find doctors?

What is the FDA warning about Suboxone/Subutex/Belbuca and dental injuries? Is there a lawsuit about it?

What number do I call if I have had dental issues while on Suboxone/Bupe?

How can I sign up to receive The Doctor Patient Forum's free newsletters?

Click here to sign up!

Catch up on all of our past newsletters 

How do I advocate for a loved one who is in the hospital?

Some basic facts:

• If the patient is currently a chronic pain patient and takes daily prescription opioids, the patient is less likely to receive opioids while in the hospital.
• Chances are the hospitalist is already biased against the patient.

Step by step instructions: 

1. Have the patient ask for the charge nurse.
2. If you’re on the phone, ask the patient to put you on speaker so you can start a conversation with the charge nurse.
3. Introduce yourself saying:
   1. “Hello, my name is (insert your name here). I am a patient advocate based out of (insert your location). First, thank you for your hard work during the pandemic.  I know you’re terribly busy but I imagine we both have the same goal of controlling this patient’s pain.”
   2. “Can you please tell me whose care this patient is under? Is the hospitalist a resident? A fellow? Would you kindly provide me with their name, please?”
   3. Would you please contact the hospitalist, tell them the patient’s pain is unmanaged and he needs adequate pain relief?”
   4. “If the doctor is unwilling to put in an order for adequate pain medication, would you please tell me why?”
4. If the doctor still doesn’t put an order in, the next step is the have risk management, the charge nurse, the hospitalist and the surgeon all come to the patient’s room at the same time so you all can have a conversation together.
5. This is a time-consuming but necessary process.
6. Once discharged, if the patient’s health was made worse by the treatment received at the hospital, then the next step would be to contact a medical malpractice attorney.

Some more tips:

• Documentation is key. Write down the names of every person you speak with and exactly what they say to you. This will be very important if you choose to file a complaint with the medical board.
• Hospitals have protection from the feds, so there is no reason pain shouldn’t be treated while inpatient.
• Remember, hospitals do have patient advocates, but they work for the hospital, not for the patient.
• If the patient is under a pain management contract, the patient should not accept an opioid prescription upon discharge unless already agreed upon by the pain management doctor. Even accepting a prescription for 5 pills can cause a patient to be discharged from pain management if it hasn’t been discussed in advance.
• If the patient’s pain management doctor has agreed to allow the patient to accept a prescription from the hospitalist or surgeon, it’s always best to take it to the patient’s pharmacy instead of filling it at the hospital’s pharmacy.

PDF version of these instructions

What is NarxCare?

NarxCare, a product of a company called Bamboo Health, is a proprietary data analytics program. It uses up to 70 data points (that only Bamboo Health knows) and mixes them with your PDMP (prescription history) to assign four 3-digit scores letting your doctor or pharmacy know if you have a high risk of abuse or overdose. There is a Narcotic Score, a Stimulant Score, and a Sedative Score, and an Overdose Risk Score (ORS). According to Bamboo Health, "NarxCare aids care teams in clinical decision making, provides support to help prevent or manage substance use disorder, and empowers states with the comprehensive platform they need to take the next step in the battle against prescription drug addiction." Essentially, NarxCare pulls data from multiple state registries looking for red flags of drug seeking behavior. 

The three categories of prescription medication it looks at are narcotics (opioids), stimulants (ADHD meds) and sedatives (benzos, sleeping meds, etc.). "The NarxCare report identifies risk factors with interactive visualizations, as well as an Rx Graph, and a set of scores that numerically correspond to the patient’s PDMP data." Although Appriss states on their website that their product shouldn't be used by itself to make medical decisions, that's not what's actually happening. As shown in this NarxCare article, patients are being denied medication or even being dismissed from a medical practice based on a NarxCare score alone.

Some of the risk factors used in the proprietary algorithm are:

1. The number of prescribers a patient has had in a two-year period.
2. The number of pharmacies a patient used in a two-year period. 
3. The dosage (MME-Milligram Morphine Equivalent).
4. Amount of other medications that may increase potency of other medications.
5. Number of times prescriptions overlap with prescriptions from other providers
6. Any Mental Health Diagnosis
7. Distance from patient to doctor

Nobody knows (except Bamboo health) exactly what goes into the ORS (Overdose Risk Score).  Some of the factors we've found listed are criminal history, diagnoses in your EHR (Electronic Health Record) including mental health diagnosis (such as depression or PTSD), distance patient drives to the doctor, and diagnosis of sleep apnea.  

What are some of the problems with NarxCare?  Why isn't it a good thing?

1. There is no room for context. What does this mean? As mentioned above, if someone has more than one prescriber within a two-year period, that will increase the ORS.  But, there isn't a way to include an explanation such as if a patient moves, if a patient has multiple surgeries within that time period, or if a patient's doctor retires causing the need for a new physician.
2. A patient's pet's prescription history is included. This means if a patient has surgery and if her pet has surgery, it appears as though the patient is getting prescriptions from more than one doctor.  
3. The NarxCare algorithm has never been externally validated.  What does this mean? Essentially, it means the results of the study the algorithm is based on haven't been proven to apply to people outside of the study.  Yet, that's exactly what they are doing.  They are calling it evidence-based even though it is not.  
4. If someone is prescribed 90 MME (Morphine Milligram Equivalent) or more, the NarxCare score is automatically at the to 1% of all Overdose Risk Scores.  Why is this bad?  Well, the whole concept of MME and arbitrary thresholds such as 90 MME are flawed and not based in science.
5. The NarxCare algorithm has inherent gender and racial bias. How? Since they use criminal history, it is racially biased. Since more it women tend to have mental health diagnoses such as PTSD due to trauma, it automatically is biased against women. We have heard stories of women who have been denied prescription opioids due to having been a survivor of sexual abuse.

As summarized in this Wired article, the entire concept of NarxCare is flawed and is flagging patients who shouldn't be flagged.  "According to one study, 20 percent of the patients who are most likely to be flagged as doctor-shoppers actually have cancer, which often requires seeing multiple specialists. And many of the official red flags that increase a person's risk scores are simply attributes of the most vulnerable and medically complex patients, sometimes causing those groups to be denied opioid pain treatment."

Many people are fighting against the use of NarxCare. Almost every state uses Aprriss' PDMP platform and roughly 25 states in USA use NarxCare. Contact your local Department of Health to find out if your state uses it. For more information about Narxcare, we've included links to a few articles.

PDMP and NarxCare

Dosing discrimination 

What Every Patient Should Know About NarxCare

PDMP and NarxCare

The flawed study NarxCare is based on

What do all of the abbreviations and acronyms mean?

• BSC - Board of Scientific Counselors
• CDC - Center for Disease Control and Prevention
• CDC GL - CDC Guidelines (usually referring to the 2016 or 2022 guidelines for opioid prescribing).
• CNCP - Chronic non-cancer pain
• CPP - Chronic Pain Patient
• DPP - Don't Punish Pain
• EHR - Electronic Health Record
• HHS - Health and Human Services
• HR - Harm Reduction
• LTOT - Long-term opioid therapy
• MME - Morphine Milligram Equivalent
• OIH/OIHA - Opioid-induced hyperalgesia
• ORRP - Opioid Rapid Response Program
• ORT - Opioid Risk Tool
• PDMP/PMP - Prescription Drug Monitoring Program
• PROP - Health Professionals for Responsible Opioid Prescribing

What is the PDMP?

PDMP (Prescription Drug Monitoring Program) is a data base that records all controlled substance prescriptions including opioids, sleeping pills, ADHD medication, muscle relaxers, among some others. The first PDMP was developed in New York in 1918. It is now in all 50 states (as of 2021).  These data bases have been funded by the Department of Justice (to the tune of hundreds of millions of dollars).

We've seen several goals listed for the PDMP, but the most common is to give healthcare professionals real-time access to your prescription history so they can make sure you're not "doctor shopping," or otherwise abusing your medication.  Each state runs its own PDMP, usually by the HHS (Dept. of Health and Human Services). Thanks to a company called Appriss, PDMP's are now interconnected between states.

Some common questions answered:

1. Who enters your information into the PDMP?  The pharmacist/pharmacy technician.
2. Do you have real-time access to your PDMP report?  No.  Each state has different rules. Contact your HHS and ask how you can see your PDMP history and how to fix any errors.
3. Who has access to your PDMP? Pharmacies, doctors, hospitals, and in some states veterinarians and law enforcement.
4. What's a risk score in the PDMP?  This brings us to Narxcare.  PDMP pulls from many different data bases (criminal history, financial history, school grades, Electronic Health Records, etc.) and mixes it all with your prescription history to spit out a risk score as to whether your doctor should prescribe to you or not.  See the FAQ "What is Narxcare?" for a more detailed explanation. 

Still interested in reading more about PDMP? Here are a couple of articles we recommend:

Dosing Discrimination: Regulating PDMP Risk Scores

Is there a list of up-to-date statistics, research, and studies that I can use to show to media, my legislator, or my doctor?

Yes!  We have a printable document (both Word and PDF) listed here under Advocacy Tools

Did the CDC know their Guidelines could potentially harm patients? Were they warned?

Yes to both! They were warned by many organizations. They knew these Guidelines were dangerous. We gave all the details in our Debunking Lies section. It includes links to all the warnings and an explanation of what happened and how the CDC responded. Read our answer here.

Do studies show that prescription opioids don't work for long-term chronic non cancer pain?

No, they don't! But, that doesn't stop anti-opioid zealots from making this claim. Read all about it and how to counteract this false narrative here, in our Debunking Lies section.

What is the SPACE Trial and does it prove that prescription opioids don't work for long-term chronic non cancer pain?

It is a study funded by the VA and done by Dr. Erin Krebs. No, it doesn't prove that prescription opioids don't work for long-term chronic non cancer pain. Yet, it is cited as a reason to not prescribe opioids and to force taper. We broke down this study for you with all the links and information you need to counteract this false statement.

What is MME? Are the concepts of MME (Morphine Milligram Equivalent) and MME limits such as 90 MME, based on solid scientific evidence?

We answered this question in detail in our Debunking Lies section. Read all about it here.

What are the 2016 CDC Guidelines? Will the updated CDC Guidelines make things better or worse? How can I comment on them?

In March 2016, the CDC published opioid prescribing guidelines. There was a lot of controversy surrounding the lack of transparency and secrecy of the CDC Guidelines. 

As many of you know, the 2016 CDC Opioid Guidelines have caused harm to many. Whether the guidelines themselves are the problem or if they have just been misapplied has been widely discussed by experts. In July 2021, the CDC released their draft of the updated opioid guidelines. We explained it all in detail in our newsletter. If you haven't had a chance to read it, please do. It helps put all of this in context. The new draft of the guidelines was published last week. Here are two very important links:

Chart of the 2016 Guidelines vs 2022 Guidelines  

The 229 page document of updated guidelines

CDC is accepting comments here on the updated draft of the guidelines until April 11.  

We have some suggestions for commenting on the CDC Guidelines.

Many media outlets covered this story. Our favorite is from Josh Bloom "Panic in PROPville."

Here is the story from Pain News Network called "Why CDC Dropped One-Size-Fits-All Approach to Pain Care":

Did The Doctor Patient Forum Submit Comments on the Docket for the Updated/Expanded CDC Guidelines?

Yes, we did!  Feel free to use any of the information included in our comment.

Word  pdf

What is ORRP (Opioid Rapid Response Program) and Do They Actually Help Abandoned Patients Find Doctors?

We have all of the details here including e-mails we received from the director along with quotes from the intimidating phone call. They called us demanding we remove social media content that didn't exist.

What Number Do I call If I've Had Dental Issues While on Suboxone/Bupe?

410-442-6648

This article contains the following information:

• Why would CPP's want this information?
• What is illicit fentanyl?
• What are some myths about illicit fentanyl?
• What are illicit fentanyl testing strips?
• Are illicit fentanyl testing strips legal?
• Where can I get them?
• How do I use them?

Why Would CPP's Want This Information?

• I want to be clear that we at The Doctor Patient Forum do not encourage anyone to obtain pills on the street, from a friend, or from anywhere other than your pharmacy.
• We are aware that some chronic pain patients (CPP's) who have been medically abandoned have been so desperate for pain relief that they've either gone to the street or taken a pill from a friend.
• Since up to 42% of all pills on the street contain illicit fentanyl, we want to provide Harm Reduction information so if you are getting medication from somewhere other than your pharmacy, you know what to do to try to keep yourself safe.
• Please understand that when you take a pill that you obtained from someone other than your pharmacy, even if you use illicit fentanyl testing strips, there is no guarantee that the medication is safe for you to take. Even if you test your medication, we highly recommend you have Naloxone available (I will be adding content on this shortly, and I will link the information here) and that you don't ever take the medication when you're alone. In case you don't have anyone who can be there with you, there is a never use alone hotline 1-800-484-3731.  

What is Illicit Fentanyl?

Illicit Fentanyl is not the same as prescription fentanyl. It is often made in labs in China and then smuggled in the the USA through Mexico. Illicit fentanyl is the leading cause of all drug-related deaths in the USA. Many who end up taking illicit fentanyl don't even realize it's in the medication or drugs they ingest. Due to this fact, we prefer to call it a poisoning instead of an overdose. Those who sell it often use pill presses so it looks identical to prescription medication. It is made to look like hydrocodone, oxycodone, Xanax, and other prescription drugs. It has also been found in other illicit substances such as heroin, meth, or cocaine. One reason drug dealers are using illicit fentanyl is due to its potency. A tiny bit goes a long way, but that is also the reason it kills so many people. The last statistic I read was that 42% of all street pills tested has illicit fentanyl in them.

What Are Some Myths About Illict Fentanyl?

• A very common myth is that prescription grade fentanyl is what's killing so many people. This is absolutely false. Media and even addiction specialists often conflate prescription fentanyl with illicit fentanyl analogues. Illicit fentanyl, not prescription fentanyl, is what's killing so many people.
  • A recent toxicology study showed "Out of 18,393 deaths that were confirmed, probable, or suspected heroin deaths (including 2678 with morphine listed as cause of death on the DC) and 404 as probable pharmaceutical morphine deaths, among deaths with fentanyl detected, 89.3% were defined as probable or suspected IMF (illicitly manufactured) and 1.0% as probable pharmaceutical (prescription) fentanyl."
• There is a false narrative that's widely spread in media and repeated often that just touching illicit fentanyl or being in the same room as it can cause an overdose/poisoning. You see images of police in hazmat suits. This doesn't happen. It's important to understand this fact because if you by a pill off the street and test it for illicit fentanyl, and it turns out your pill contains illicit fentanyl, merely touching the substance will not cause an overdose/poisoning.

Ryan Marino MD often addresses the myths surrounding illicit fentanyl. He has shared the following image with permission to share it:

What Are Illicit Fentanyl Testing Strips?

Illicit fentanyl testing strips are part of Harm Reduction that assist in overdose prevention. They are actually FDA approved to detect fentanyl in urine, but are also increasingly being used as a Harm Reduction drug-checking strategy.

Are They Legal?

• Sadly, they are illegal in some states because they are considered drug paraphernalia. In the states they're illegal, Harm Reduction groups are fighting to change those laws. Josh Bloom wrote about this issue in an article called Fentanyl Test Strips Are Illegal. This Is Obscene

•  Please check hereTo find out if they're legal in your state.

Where Can I Get Them?

• For individual or small orders, you can get them at Dosetest. They cost about $1.00 each. 
• For larger orders (like if you want to order in bulk for yourself or to hand out) you can get them at BTNX. For more information about how to order them in bulk, please e-mail Michael@btnx.com.They sometimes offer a discount for new customers.

How Do I Use Them?

• Here is a Brochure from NYC Dept. of Health showing how to use illicit fentanyl testing strips. Here is a PDF of the Brochure.

• One important point to note is the results are opposite from other tests like pregnancy tests.
  • One tine = positive (+) result (meaning there is illicit fentanyl present).
  • Two Lines = negative (-) result (no illicit fentanyl detected).
  • The following graphic explains how to read results:

• Remember, a negative test result is not a guarantee that illicit fentanyl is not in your pill.

• Most how to videos and information are geared toward PWID (people who inject drugs). We know that most CPP's who go to the streets won't inject the medication. When testing a pill that you are not intending to inject you have two options -both are explained in the following video:

1. 1. Dissolve the entire pill in water and test it (this is the most reliable method). Once it tests negative for illicit fentanyl, you can still swallow the liquid, or you can put it in a capsule to avoid tasting the dissolved pill.
      • Here are two websites to purchase gel caps which are specifically made for liquid such as essential oils: 
        • Amazon
        • Azure Standard
      • How to fill a gel cap with liquid according to these websites:
        • Pull apart the capsule. One side is larger than the other, allowing the smaller end to fit inside the larger one
        • Draw your liquid supplements into a medicine dropper. Place the end of the dropper over the smaller side of the gel capsule.
        • Carefully squeeze the dropper to fill the capsule. Slide the larger end on to enclose the liquid inside the capsule.
        • Store in an airtight container in a cool, dry place. 
   2. You can scrape off part of the pill as Amanda shows in the following video. Just know there is no guarantee that the composition of a counterfeit pill is uniform throughout. So, it's possible that the small sample you test will be negative for illicit fentanyl, but other parts of the pill will be positive.

• If you bought more than one pill, testing one of the pills does not guarantee that the other pills will have the same composition.

Here is a how to video by an amazing Harm Reduction advocate, Amanda Mazur. Check out her Tik Tok videos for more information about Harm Reduction. In addition to teaching about Harm Reduction, Amanda also fights for the rights of CPP's to have access to prescription opioids.

As always, if you have any questions feel free to contact us through our contact page. 

This content was written by Bev Schechtman and Carrie Judy for The Doctor Patient Forum. Updated March 3, 2022

Introduction to fitness in chronic pain/illness

What does fitness mean in someone with chronic pain/illness?

Fitness in the world of chronic pain and illness seems impossible. Just hearing someone suggest it can be offensive and overwhelming. We know exactly what that feels like. Sometimes it can even feel like we are being blamed for our illness/pain. People have no idea how hard it is to be sick and in pain every minute of every day and night. We completely get it. This is why we added this category. There is a lot of information on the internet about fitness, wellness, health, and even how to manage an illness with diet and exercise. But, we haven't seen much out there that truly shows how a CPP (Chronic Pain Patient) can apply any of this to a life filled with sickness and pain. 

Fitness means different things to different people. To some, it can mean working out an hour a day at the gym. To others, it means making tiny changes in daily nutrition. It can even simply mean a change in mindset. 

Claudia and I (Bev) both have Crohn's Disease. We have spent years in and out of the hospital. We want to help you make tiny changes that can make a difference in your life. 

Is it really possible to achieve a fitness goal when stuck in bed or unable to leave the house?

Yes! It really is possible. We are going to give you tips about nutrition, exercises, and lifestyle changes that can all add up to make a difference for you. We know we can't ever cure our illnesses or painful conditions, but what we can do is make little changes that can help us live the best lives we can in the situations we are given.

Things you will hear us say...

• Small changes can make a big difference
• Be kind to yourself
• Listen to your body

Things you won't hear us say...

• It's your fault you're sick
• You did this to yourself
• If you could just (exercise, walk, go to the gym, get up earlier, etc.) you wouldn't be sick anymore

This article contains the following information:

• What is Harm Reduction?
• What is Harm Reduction in relation to drugs?
• What does Harm Reduction have to do with pain patients?

We cover the following Harm Reduction information/resources:

• Illicit Fentanyl testing strips
• Never Use Alone Hotline and Information
• Naloxone (Narcan)
• Kratom

What is Harm Reduction?

There isn't one standard definition, but I asked Maia Szalavitz, a Harm Reduction expert who wrote the first comprehensive book on the history of Harm Reduction and drugs called Undoing Drugs , how she would define it. She said "It's policy that focuses first on stopping people from getting hurt, not stopping them from getting high or engaging in other risky behavior. Importantly, that definition doesn't exclude abstinence approaches for those who seek them." The concept of Harm Reduction has been used for years in this country.

For example:

1. Seat belts - We know people will drive carelessly and there will always be car accidents. So, we use seat belts to reduce harm of the accidents.
2. Condoms - We know people are going to have sex and teaching abstinence only won't prevent unwanted pregnancies and STD's. So, we have things like condoms to try to prevent pregnancies and STD's.
3. Designated Driver - We know some people will drink when eating dinner out. So, there is the recommendation to have a designated driver who won't drink to prevent driving while intoxicated.

What is Harm Reduction In Relation to Drugs?

 National Harm Reduction Coalitionexplains it like this: "National Harm Reduction Coalition works for the Harm Reduction movement built on a belief in and respect for the rights of people who use drugs. Our strategies include building leadership among people who use drugs and supporting communities in reducing the negative consequences associated with drug use." So, basically it means instead of telling people to not use drugs (like Nancy Reagan's just say no movement) Harm Reduction acknowledges that people are going to use drugs, so they do what they can to keep them  safe and alive by using different strategies and techniques. In the last year, there have been over 100,000 drug related deaths in the USA, so clearly what we are doing (the war on drugs) isn't working. As Maia mentioned, if people choose abstinence like with a 12 step program, that is included in Harm Reduction. Although Harm Reduction has been accepted in USA in relation to cars or alcohol, Maia explains that "it's a very old idea, but in drug policy it is radical because we've always focused on stopping drugs, not on harm and we cause lots of harm trying to stop drugs." There are many techniques used in Harm Reduction in drug use. I'll list some examples, and then will add content about each one. As we add each category listed below, we will link each one to the information we add. This isn't an exhaustive list.

1. Illicit Fentanyl testing strips
2. Never Use Alone Hotline and Information
3. Naloxone (Narcan)
4. Kratom
5. Lock Boxes/Safe for controlled substances
6. Safe or safer supply
7. Needle exchange (syringe service programs)
8. Safe Injection Sites

What does Harm Reduction Have To Do With Pain Patients?

You might be asking how this relates to pain patients and why this information is even on our website. As more and more pain patients are cut off from their medication, many are going to the streets to purchase pain medication out of desperation for pain relief. Since up to half of the supply of medication on the street is actually counterfeit containing illicit fentanyl, we feel it's very important for pain patients to know how to access Harm Reduction techniques so they can test their medication and not die from drug poisoning. I didn't know much about Harm Reduction (HR) until last year. Several prominent CPP advocates have been trying to join the CPP community with the HR community for a few years. Lelena Peacock, Carrie Judy (a researcher with our org), and D. S. Nelson were the first CPP advocates I saw who understood early on how HR and CPP's need to be working together and not against each other. 

An article in Reason came out yesterday about the ruling for the Defendants (four drug companies-Teva, Johnson & Johnson, AbbVie, and Endo) in opioid litigation. This is huge for our community. The Judge said the  Plaintiffs failed to prove the charges of public nuisance and false advertising. Superior Court Judge, Peter J. Wilson wrote a 42 page ruling. This was the first of thousands of cases filed across the country regarding the "opioid crisis," filed in 2014. The Plaintiffs' claims were:

1. The companies used false advertising
2. They engaged in unlawful business practices
3. They created a public nuisance

Judge Wilson ruled the Plaintiffs failed to prove any of these claims. Some direct quotes from Judge Wilson's ruling:

Please join New Hampshire's Don't Punish Pain Rally Facebook page to network with other advocates from NH.

New Hampshire’s Bill, HB1639, was signed by Governor Sununu in August of 2020. It was originally created as a separate bill, SB 546, but was later added to Omnibus Bill HB1639. 

The bill was created and passed with the amazing efforts of Bill Murphy, CPP advocate and original member of Don't Punish Pain Rally. When the bill was signed into law, Bill Murphy created this tweet: 

"New Hampshire’s Bill, HB1639, has been signed by Governor Sununu. This Bill addresses the “Treatment of Chronic Pain”. Key sections of this legislation are attached"

Please join Oklahoma's Don't Punish Pain Rally Facebook page to network with other CPP's in Oklahoma

Oklahoma's Intractable Pain Bill

In April 2021 Oklahoma's Bill SB57 unanimously passed the House and Senate.

Hearing About Harms From Forced Tapers

On November 1, 2021 the Oklahoma, Alcohol, Tobacco, and Controlled Substances Committee held a hearing. The  purpose was to discuss an interim study that was done about rapid de-prescribing and the horrific effects it has had on patients.  This was requested and organized by Tamera Stewart-P3Alliance Policy Director, Julia Heath-P3Alliance Director of Medical Initiatives, along with their leadership team.

Some of the speakers were Beth Darnall ,PhD from Stanford University, Dr. Vanila Singh, other doctors, a pharmacist, and chronic pain patients.

• "We are exposing vulnerable patients to new health risks by reducing opioid prescriptions."
• "We saw increased health problems, suicidal ideation, suicides, overdose deaths as a consequence or opioid reductions themselves."
• Dr. Darnall mentions this recent Jama study on the association of dose tapering with overdose or mental health crisis among patients prescribed long-term opioids.
• We've failed to implement patient-centered care for our most vulnerable population.

Season 2 Episode 1 - 12/9/22

Link to Episode

On June 2, 2021, Rhode Island's Governor Dan McKee signed Bill 384 into law. A copy of the bill can also be found here. Greg Amore, Claudia Merandi's local Representative, fought hard for this bill to pass which protects intractable pain patients from the 2016 CDC Opioid Guidelines. Recently, in March 2022, Arizona also passed legislation that was based on this bill from Rhode Island. That has been Claudia's hope for years, that she could pass a bill in Rhode Island that would trickle down into other states. Practical Pain Management covered this story.

Please join Rhode Island's Don't Punish Rally Facebook page to network with other CPP's in Rhode Island.

An extremely important article was just posted last week on September 17, 2021.  We at The Doctor Patient Forum/Don't Punish Pain have been researching the CDC Guidelines and how they were written.  We specifically have focused on one of the main authors, Dr. Roger Chou.  We had the privilege of collaborating with a palliative care doctor who is also on the AMA Opioid Task Force, Dr. Chad Kollas. Dr. Kollas along with a few other chronic pain patients and advocates worked together to put out this phenomenal article showing in detail the unacceptable conflicts of interests Roger Chou has, and explains in why we need a congressional investigation into how the guidelines were written.  How can you help?  Familiarize yourself with the content of this article, and forward it to your local legislators. your local representatives, your senators, etc.  The following goals are listed at the end of the article:

Roger Chou’s Undisclosed Conflicts of Interest: How the CDC’s 2016 Guideline for Prescribing Opioids for Chronic Pain Lost Its Clinical and Professional Integrity

By: Chad D. Kollas MD, Terri A. Lewis PhD, Beverly Schechtman and Carrie Judy

“I'm present. Uh … I do have a conflict. I receive funding to conduct reviews on opioids, and I'll be recusing myself after the um, director's, uh, um, um, uh… update.”

- Dr. Roger Chou, Center for Disease Control and Prevention (CDC) National Center for Injury Prevention and Control (NCIPC) Board of Scientific Counselors (BSC) Meeting Friday, July 16, 2021.

Introduction
For those familiar with the controversial relationship between the anti-opioid advocacy group, Physicians for Responsible Opioid Prescribing (PROP, recently renamed, Health Professionals for Responsible Opioid Prescribing), and the Centers for Disease Control’s CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016, (2) (hereafter called “the 2016 Guideline”), Dr. Roger Chou’s disclosure represented a stunning admission (3, 4). Chou had originally announced his intention to help influence opioid policy in a 2011 article that he co-authored with PROP’s founders (5), and he was a bold signatory to PROP’s 2012 Petition to the Food and Drug Administration (FDA) to change opioid labeling (6; See Figures 1a and 1b: First page and signatory page.)

• States and Status of Legislation Protecting CPP's and Providers:
• List of all state laws about opioid prescribing
• Advocacy Tools with tips on how to get legislation in your state

States and Status of Legislation Protecting CPP's and Providers:

• Rhode Island Bill 384 - Signed into Law
• Oklahoma Bill SB57 - Signed into Law
• New Hampshire - Signed into Law
• Minnesota  - Signed into law
• Arizona  - Signed into law
• Colorado SB23-144 - Passed House and Senate - Waiting to be signed into law 
• Illinois HB 2046 - In Committee

List of All State Laws About Opioid Prescribing:

Many states have prescribing laws.  Read An Examination of State and Federal Opioid Analgesics and Continuing Education policies which was printed in 2020. We've also included the pdf version of the article. The purpose of the article is "To evaluate the impact of its Opioid Analgesic Risk Evaluation and Mitigation Strategy (REMS) program, the US Food and Drug Administration (FDA) requested the opioid manufacturers responsible for implementing that program provide information regarding opioid policy changes from 2016 to 2018. FDA also requested a survey of state requirements for pain and opioid prescribing continuing education (CE), the number of prescribers affected by those requirements, the extent to which a REMS-compliant CE program would meet each state’s requirements, and the number of relevant CE programs available."  

We've included two charts that list prescribing laws state by state

1. This includes state laws and Continuing Education laws
2. Laws limiting the prescribing and dispensing of opioids done by the Network For Public Health Law

See our Advocacy Tools to see tips on how to start the process of getting legislation in your state.

CPP advocate from NH, Bill Murphy, walks you through the process of getting legislation in your state:

When our VP, Bev Schechtman, was denied adequate pain medication when hospitalized for kidney stones due to having been a victim of sexual abuse, she became obsessed with researching how this could happen. She learned about NarxCare and the Opioid Risk Tool. We, at The Doctor Patient Forum/Don't Punish Pain, have been researching these topics for the past four years. We've reached out to countless investigative journalists only to be shot down. Thankfully, Maia Szalavitz, an author and leader in harm reduction, was interested in telling the story of NarxCare and other risk tools. This was our first piece of national media, and we are so excited to share it with you. We suggest holding on to this article and sharing it with your local legislators.  About half of the states use NarxCare, and this article can help you fight against it. Read about how our country has tried to help the "opioid crisis" by using a risk score algorithm, yet it seems they're only making matters worse.

• Background of the CDC Guidelines
• Who should comment?
• Where do I put my comment?
• Why should I comment?
• Rules for commenting (the CDC commenter's checklist)
• What should I say in my comment?
• Other articles about the updated/expanded guidelines
• CDC docket comment from us at The Doctor Patient Forum

As many of you know, the 2016 CDC Opioid Guidelines have caused harm to many. Whether the guidelines themselves are the problem or if they have just been misapplied has been widely discussed by experts. In July 2021, the CDC released their draft of the updated opioid guidelines. We explained it all in detail in our newsletter. If you haven't had a chance to read it, please do. It helps put all of this in context. The new draft of the guidelines was published last week. Here are two very important links:

Word and pdf of this information

Some CPP advocates created this Community Sign-On Letter for anyone who'd like to sign. Please sign this as well as submitting your own comment on the docket.

• Here is the 229 page draft of the updated Guidelines.

• Here is a chart comparing the 2016 Guidelines vs 2022 draft version of the updated/expanded Guidelines.

• All Chronic Pain Patients (CPP's) should comment.
• All loved ones (family and friends) of a CPP should comment. They should include the following information:
  • What it's like for them to watch you suffer needlessly.
  • If your pain is currently adequately treated, they should write what you're able to do and how you're able to function due to medication.
  • If your pain was adequately treated and has been tapered or stopped, they should write how your life has changed since the medication has been taken away. Emphasize function. What things were you able to participate in before your medication was stopped? What things are you unable to do now?

• CDC is accepting comments here on the draft of the updated/expanded Guidelines until April 11, 2022. You can also read comments that are already posted.
• ***IMPORTANT INFORMATION - The link for leaving comments about the draft of the guidelines has been broken off and on. If you find the link is broken when you're trying to leave a comment, please contact Arlene Greenspan at 770-488-4696 or e-mail her at opioids@cdc.gov

• We can't express strongly enough how important it is that you comment. Every single person who has been devastated by these Guidelines needs to post a comment.

• We also suggest that you send a copy of your comments to your local legislators. They need to hear from their constituents about how devastating the 2016 Guidelines have been and how your lives have been harmed.

• CDC will review ALL comments, and based on what they see will update the draft accordingly. The new draft will come out by the end of 2022 and will replace the 2016 Guidelines.

****We list some suggestions for you, but please don't use these suggestions word for word. If you do, there is a good chance the CDC will remove your comments.****

The CDC lists the "commenter's checklist." The checklist includes the following:

"Tips for Submitting Effective Comments

Overview

A comment can express simple support or dissent for a regulatory action. However, a constructive, information-rich comment that clearly communicates and supports its claims is more likely to have an impact on regulatory decision making.

These tips are meant to help the public submit comments that have an impact and help agency policy makers improve federal regulations.

Summary

• Read and understand the regulatory document you are commenting on
• Feel free to reach out to the agency with questions
• Be concise but support your claims
• Base your justification on sound reasoning, scientific evidence, and/or how you will be impacted
• Address trade-offs and opposing views in your comment
• There is no minimum or maximum length for an effective comment
• The comment process is not a vote – one well supported comment is often more influential than a thousand form letters

Detailed Recommendations

1. Comment periods close at 11:59 eastern time on the date comments are due - begin work well before the deadline.
2. Attempt to fully understand each issue; if you have questions or do not understand a part of the regulatory document, you may ask for help from the agency contact listed in the document.
   
   Note: Although the agency contact can answer your questions about the document's meaning, official comments must be submitted through the comment form.
3. Clearly identify the issues within the regulatory action on which you are commenting. If you are commenting on a particular word, phrase or sentence, provide the page number, column, and paragraph citation from the federal register document.
4. If a rule raises many issues, do not feel obligated to comment on every one – select those issues that concern and affect you the most and/or you understand the best.
5. Agencies often ask specific questions or raise issues in rulemaking proposals on subjects where they are actively looking for more information. While the agency will still accept comments on any part of the proposed regulation, please keep these questions and issues in mind while formulating your comment.
6. Although agencies receive and appreciate all comments, constructive comments (either positive or negative) are the most likely to have an influence.
7. If you disagree with a proposed action, suggest an alternative (including not regulating at all) and include an explanation and/or analysis of how the alternative might meet the same objective or be more effective.
8. The comment process is not a vote. The government is attempting to formulate the best policy, so when crafting a comment it is important that you adequately explain the reasoning behind your position.
9. Identify credentials and experience that may distinguish your comments from others. If you are commenting in an area in which you have relevant personal or professional experience (i.e., scientist, attorney, fisherman, businessman, etc.) say so.
10. Agency reviewers look for sound science and reasoning in the comments they receive. When possible, support your comment with substantive data, facts, and/or expert opinions. You may also provide personal experience in your comment, as may be appropriate. By supporting your arguments well you are more likely to influence the agency decision making.
11. Consider including examples of how the proposed rule would impact you negatively or positively.
12. Comments on the economic effects of rules that include quantitative and qualitative data are especially helpful.
13. Include the pros and cons and trade-offs of your position and explain them. Your position could consider other points of view, and respond to them with facts and sound reasoning.
14. If you are uploading more than one attachment to the comment web form, it is recommend that you use the following file titles:
    • Attachment1_<insert title of document>
    • Attachment2_<insert title of document>
    • Attachment3_<insert title of document>
    This standardized file naming convention will help agency reviewers distinguish your submitted attachments and aid in the comment review process.
15. Keep a copy of your comment in a separate file – this practice helps ensure that you will not lose your comment if you have a problem submitting it using the Regulations.gov web form.

Posted Comments

After submission, your comment will be processed by the agency and posted to Regulations.gov. At times, an agency may choose not to post a submitted comment. Reasons for not posting the comment can include:

• The comment is part of a mass submission campaign or is a duplicate.
• The comment is incomplete.
• The comment is not related to the regulation.
• The comment has been identified as spam.
• The comment contains Personally Identifiable Information (PII) data.
• The comment contains profanity or other inappropriate language.
• The submitter requested the comment not be posted.

Form Letters

Organizations often encourage their members to submit form letters designed to address issues common to their membership. Organizations including industry associations, labor unions, and conservation groups sometimes use form letters to voice their opposition or support of a proposed rulemaking. Many in the public mistakenly believe that their submitted form letter constitutes a "vote" regarding the issues concerning them. Although public support or opposition may help guide important public policies, agencies make determinations for a proposed action based on sound reasoning and scientific evidence rather than a majority of votes. A single, well-supported comment may carry more weight than a thousand form letters.

* Throughout this document, the term "Comment" is used in place of the more technically accurate term "Public Submission" in order to make the recommendations easier to read and understand.

Disclaimer: This document is intended to serve as a guide; it is not intended and should not be considered as legal advice. Please seek counsel from a lawyer if you have legal questions or concerns."

Sometimes it's hard to know what to say. We created some basic comment ideas. 

In case you would like some suggestions on what to say in your comments, here are some ideas:

• Tell your story and how you've been affected by the 2016 CDC Guidelines.
  • You can use your name or remain anonymous.
  • Mention your state and if your state has laws based on the CDC Guidelines.
  • Briefly describe how you've been hurt by the Guidelines.
  • Be sure to emphasize not just pain relief but also address function. What were/are you able to do with adequate pain medication that you weren't/aren't able to do without it.

• Remove ALL mention of MME (Milligrams of Morphine Equivalent)including in the supporting text.
  • Not only is there not a standard way to count MME, the hard thresholds mentioned in the 2016 Guidelines of 50 and 90 MME have caused great harm both to doctors and patients. We wrote all the details about the issues with MME in our Debunking Lies section on our website.Although CDC did remove MME thresholds from the main Guidelines, they still are mentioned many times throughout the supporting text.

• Remove ALL mention of limit of days for prescription for acute pain including in the supporting text.
  • Although they removed mention of 3, 5, or 7 day limits in the actual Guidelines, the supporting text still has "a few days" and "7 days" mentioned. This needs to be removed.

• Fund and execute a plan for how to de-implement the 2016 CDC Guidelines.
  • Although CDC claims these were "just guidelines" arbitrary limits such as MME limits and 3,5, or 7 day limits are an issue because:
    • Many state laws have been created based on them.
    • They are worked into EHR (Electronic Health Records).
    • Risk score algorithms such as NarxCare use them.
    • CDC funded an extensive implementation plan for them.
    • DEA also uses risk scores to flag doctors who "prescribe outside of the CDC Guidelines."

• The Guidelines need to be redacted and redone due to bias and conflicts of interest (COI's).
  • Read about the lack of transparencyand COI's.
  • Roger Chouwas involved in every aspect of the CDC Guidelines and has COI's.
  • PROP members who were being paid by law firms involved in opioid litigation were involved with the Guidelines.
  • Deborah Dowell, an author of both 2016 and 2022 CDC Guidelines was listed as a PROP member at a meeting with FDA regarding PROP’s 2012 petition. Here is the document showing Dowell as a PROP member

• Pain is not one condition and they need to mention there are MANY very painful conditions that might require opioids.
  • Exclusions didn't work in 2016 and won't work now.
  • They excluded "cancer pain" in 2016 Guidelines yet cancer patients have been affected.
  • They added Sickle Cell Disease as an exclusion in these Guidelines (which is good since SCD patients have been horribly affected by the 2016 Guideline), but they also need to mention there are many painful diseases and conditions. Just saying "palliative care" patients are exempt won't help anyone. It didn't help in the 2016 Guidelines.
  • There is no scientific basis for the distinction of cancer and non-cancer pain.
  • Mentioning some conditions and not others leads to a lack of individualized care.

OTHER ARTICLES ABOUT  THE UPDATED/EXPANDED CDC GUIDELINES

Many media outlets covered this story. Our favorite is from Josh Bloom "Panic in PROPville."

Here is an article from Pain News Network called "Why CDC Dropped One-Size-Fits-All Approach to Pain Care":

"Where's the Patient's Voice in Evidence-based Treatment & Research?"

Our VP, Bev Schechtman, was a guest on Pharmacy Podcast Network.

Part 4 in the series "Pharmacist and Physician Opioid Collaborative" on Pharmacy Podcast Network.

Listen as Todd Eury, from Pharmacy Podcast Network, asks Bev a question that is long overdo..."What is the patient's perspective?"

"No one ever asks the patient what we think, we are kind of shoved out of it." ~Bev Schechtman

"But what they're missing, Bev, is they're missing the empathetic bedside manner to look you in the eye and give you a sincere little smile, showing they're there for me as a patient." ~Todd Eury

"We feel like everyone around us is going to treat us as though everything we say is a lie, that we're going to try to get out of whatever it is they think they're trying to catch us in, and we can't trust any of them." ~Bev Schechtman

"The way they set up the system patients can't be honest with our providers." ~Bev Schechtman