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  • Why Can't I Get Help Managing My Pain? Patient Denied Opioids Due To Being a Sexual Abuse Victim!

    Watch Claudia interview Bev Schechtman about her experience in the hospital when she was denied pain medication for kidney stones due to being a victim of sexual abuse.  

    "Everything is looked at as drug-seeking.  No matter we do, they think we're drug-seeking." ~ Bev Schechtman

  • AMA Report Shows Decrease In Opioid Prescribing and Increase in Overdoses

    American Medical Association Endorses Ban on Energy Drink Marketing to Minors - BevNET.com

    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.” 

  • Chronic Pain and Dr. Drew

    Chronic pain being discussed on Dr. Drew with Don't Punish Pain Founder Claudia Merandi Follow this link

  • DEA Warns of Counterfeit Pill "Surge" Following its Crackdown on Prescriptions

    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.

  • FAQs

    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? 

    What is the VALUE Study?


    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 Appriss, is a proprietary data analytics program. It uses up to 70 data points (that only Appriss knows) and mixes them with your PDMP (prescription history) to assign a 3 digit score letting your doctor or pharmacy know if you have a high risk of abuse or overdose. According to Appriss, "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

    Nobody knows (except Appriss) 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?  What 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:

    This study finds that Prescription Drug Monitoring Programs fail to reduce opioid overdoses and increase the use of black market opioids

    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":

    By Pat Anson, PNN Editor

    The reaction from patients, advocates and the medical community to a revised draft of the CDC’s opioid guideline has largely been positive, with many cheering the flexibility it gives doctors in deciding whether to prescribe opioids for pain.  

    Although voluntary and only intended for primary care physicians, the original 2016 guideline’s dose limits became hard thresholds for doctors in all specialties, who feared scrutiny from regulators and law enforcement if they didn’t follow them. The revised draft still recommends caution when prescribing opioids, but emphasizes that physicians should use their own judgement.

    “Treating pain is complex. There are a variety of factors at play. And we know that patients respond differently to different types of pain. We tried to incorporate that nuance so that we’re not coming out with something that’s a one-size-fits-all. It really needs to be individualized and flexible,” said Christopher Jones, PharmD, Acting Director of the CDC’s National Center for Injury Prevention and Control.”

    People who’ve been closely following the guideline process were surprised at how extensive the changes are. At a July 2021 public meeting, an independent panel advising the CDC expressed alarm that the agency seemed intent on keeping a recommendation that opioid doses be limited to no more than 90 morphine milligram equivalents (MME) per day.

    In the last six months, that dose threshold was taken out of the revised draft, which was published Thursday in the Federal Register.

    “It was exciting to open up the draft and see a significant pivot,” said David Dickerson, MD, who chairs the American Society of Anesthesiologists’ Committee on Pain Medicine. “I think the CDC authors have acknowledged that they wanted to do it different this time.”

    Dickerson was not only pleased to see the 90 MME threshold go away, but a stronger focus on the many different types of pain, whether its temporary acute pain from surgery or chronic pain from a disabling, incurable disease.  

    “I think the text of this manuscript is really well done in its draft form right now. When I read through it, it was a great refresher and highlighted some studies that perhaps I had missed,” Dickerson told PNN. “They are instructive, they’re specific, but they also have an intentional vagueness to them to allow for clinicians to practice medicine.”

    Importantly, the guideline also makes clear that it shouldn’t be used by third parties to dictate how pain should be treated.

    “This voluntary clinical practice guideline provides recommendations only and is intended to be flexible to support, not supplant, clinical judgment and individualized, person-centered decision-making. This clinical practice guideline should not be applied as inflexible standards of care across patient populations by healthcare professionals, health systems, pharmacies, third-party payers, or state, local, and federal organizations or entities.”

    “States and insurers have turned the guideline into laws and unbending regulations, preventing physicians from treating patients as individuals with specific needs,” Bobby Mukkamala, MD, Chair of the American Medical Association’s Board of Trustees, said in a statement. “The list of misapplications of the 2016 guideline is long, and its impact has been tremendous harm.

    “The CDC’s new draft guideline — if followed by policymakers, health insurance companies and pharmacy chains — provides a path to remove arbitrary prescribing thresholds, restore balance and support comprehensive, compassionate care.”

    Nearly 40 states have codified the 2016 guideline in some way, often by limiting the number of opioid pills that can be dispensed for an initial prescription to seven days’ supply or less.  Dickerson hopes those states will review and revise their laws and regulations to better reflect what the CDC recommends in its revised draft – that enough opioids be prescribed for “the expected duration of pain.”

    “We should right-size our care for the individual patient and be procedure specific. Before it was one-size-fits-all, three to seven days’ (supply),” Dickerson said.  

    He also thinks the Department of Justice (DOJ) and Drug Enforcement Administration (DEA) should reconsider their aggressive prosecution of doctors for prescribing high doses.

    “The work that the DOJ and DEA is doing, I want to believe is done in good intent,” he said. “I think that many of their cases will look at the prescriptions or the doses, but they might not look at the context for why the patient was receiving that care or why they were receiving those medicines.”   

    The CDC is not expected to finalize its draft guideline until late this year. You can read the guideline and leave an online comment in the Federal Register by clicking here. Comments must be received by April 11.


    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

  • George Knapp Interviews Dr. Dain Laird "Pain Med Prescriptions Did Not Cause the Opioid Epidemic"

    Listen to pain doctor and mal-practice attorney, Dr. Dan Laird discuss the false narrative and what the "opioid crisis" actually is. You won't want to miss him talking about the litigation narrative and how chronic pain patient advocates are helping to set the record straight. Click the following link:

    Pain Med Prescriptions Did Not Cause the Opioid Epidemic 

    • "Chronic pain patients are in a fight for their lives" ~Dr. Dan Laird

    • "Prescribed opioids are approaching a 10-year low and opioid deaths are higher than they've ever been in the history of the world." ~Dr. Dan Laird

  • Illicit Fentanyl Testing Strips

    This article contains the following information:

    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:

    Image

    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?

    •  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?

    • 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:

    Screenshot 31

    • 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. 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: 
        • 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

  • Our VP, Bev, Was a Guest On Pharmacy Podcast Network!

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

    Pharmacy podcast 2

    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 

      

    "

  • Physician Liability for Suicide after Negligent Tapering of Opioids by Mark A. Rothstein and Julia Irzyk

    A brand new article called:

    Physician Liability for Suicide after Negligent Tapering of Opioids

    by Mark A. Rothstein and Julia Irzyk

    Are physicians liable if they abandon or force taper a patient who is on opioids and that patient takes his life? This is an excellent article to share.

    "Abstract: The precipitous and medically contraindicated reduction or “tapering” of opioids for patients with chronic pain due to serious medical conditions has caused needless suffering and, increasingly, suicide. Physicians could be liable for wrongful death based on negligent tapering of opioids."

    Some quotes from the article:

    "Patients treated for chronic pain with opioids are highly vulnerable. They have medical conditions with severe pain that cannot be controlled by other treatment modalities or less potent analgesics. Their underlying medical condition, their pain level, and the opioids they take all may interfere with their cognitive or reasoning abilities. They are dependent on their physician’s renewal of their prescriptions; there are no safe and effective alternatives. Significantly, they bear the stigma of requiring drugs often associated with personal immorality or criminal activity. As a price for access to a substance that allows them to lead the semblance of a normal life, patients with chronic pain are often required to sign contracts pledging compliance with terms imposed on them, to submit to periodic or random urine testing, and to bear humiliation by a society that is frequently fearful, suspicious, and intolerant. Few other patients are subject to such indignities."

    "Vulnerable patients should not be abandoned or have their treatment unreasonably delayed when they are at risk of accidental or intentional overdosing."

    "A plaintiff must prove that the defendant-physician failed to meet the appropriate standard of care, which almost always requires expert testimony. An important issue is whether the standard may be established by the introduction of nonbinding professional guidelines or recommendations. In In re Jankowski, a state licensing agency brought disciplinary proceedings against a physician for, among other things, prescribing excessive levels of opioids without medical justification. The appellate court, in affirming sanctions against the physician, held that the 2016 CDC Guideline was the standard of care for a pain management physician, notwithstanding the statement in the Guideline that it applied only to primary care clinicians."

    "America’s opioid crisis is well into its third decade. There are many causes of this problem and resolving them will take a variety of measures over an extended time. Unfortunately, some past efforts to reduce the morbidity and mortality associated with improper use of prescription opioids have been ineffective and led to
    disastrous unintended consequences. One such attempt to limit the supply of prescription opioids involved the issuance of prescribing guidelines. Between 2012 and 2020, the number of opioid prescriptions declined dramatically from 255 million to 142 million, but the number of overdose deaths soared from 41,000 to 100,000. One of the most tragic consequences of curtailing the use of opioids for managing severe, chronic pain has been an increase in suicides, which now account for an estimated 30 percent of drug overdose fatalities. It is not known how many suicides result from a physician’s negligent, aggressive tapering of opioids."

    "Many physicians are concerned that prescribing opioids could lead to criminal prosecution, license revocation, loss of employment or hospital privileges, or malpractice litigation. On the other hand, legal jeopardy for failing to continue prescribing opioids to existing patients, even when the standard of care requires it, does
    not seem to be a widespread concern."

  • 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

    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:

  • Supreme Court Case on March 1, 2022 Can Make All the Difference For Doctors and Patients

    On March 1, 2022, the Supreme Court will hear a case that could make or break the future for pain doctors and their patients. Pat Anson, from Pain News Network, summed it up perfectly in this article "Supreme Court Case May Decide Future of Opioid Prescribing."


    By Pat Anson, PNN Editor

    December 29, 2021

    "Over a dozen patient and physician advocacy groups have filed legal briefs with the U.S. Supreme Court in support of two doctors appealing their convictions for criminal violations of the Controlled Substances Act.

    The nation’s high court has consolidated the cases of Dr. Xiulu Ruan of Alabama and Dr. Shakeel Kahn, who practiced in Wyoming and Arizona. Both doctors were sentenced to lengthy prison terms after being convicted on a variety of charges – including the prescribing of high doses of opioid pain medication to patients “outside the usual course of professional practice.”

    Oral arguments will be heard by the Supreme Court on March 1, with a decision expected later in 2022. Monday was the deadline for interested parties to file “amicus curiae” briefs on the case, which could have a significant impact on opioid prescribing practices nationwide if the appeals are successful. Many doctors have stopped or reduced their prescribing of opioids because they fear being prosecuted under the Controlled Substances Act (CSA).

    “It is no exaggeration to say that CSA prosecutions of physicians have already impaired the treatment of chronic pain,” Ruan’s attorneys said in their appeal. “In response to the opioid crisis, fear of prosecution has increasingly prompted pain management doctors to avoid or reduce opioid prescriptions, even when those decisions leave chronic pain patients without recourse.”

    A successful appeal would mean Ruan and Kahn could ask for new trials, along with dozens of other doctors convicted of similar charges under the CSA.

    “It will also avoid what I see as the chilling effect that it’s had on lots of doctors who are not doing anything even remotely suspicious, but are afraid that they are going to get caught because they prescribe a higher dose, and so they’re dropping people from care or tapering them,” said Kate Nicholson.

    NPAC, along with other advocacy groups and the U.S. Chamber of Commerce, are asking the high court to clearly state how the practice of medicine should be regulated under the CSA. Some argued it is best left to state medical boards, not federal prosecutors or law enforcement.

    “Patients with pain, addiction, or both desperately need appropriate care and treatment. If practitioners are held strictly liable under (the CSA), patient abandonment will become ever more common as practitioners act to avoid scrutiny,” Jennifer Oliva and Kelly Dineen, professors of health law and policy, said in their brief. “Progress in medical care in these areas can only recover if the regulation of medical practice is returned to the province of the states except in narrow circumstances.”

  • Supreme Court ruled in our favor 9-0!

    SCOTUS sides with the petitioner and Health Law Professors in Ruan v. United States 9-0! As explained by Jennifer Oliva:

    The bottom line is that the DEA can no longer say "we think this exceeds the legitimate bounds of medical practice" and then put on their paid experts. INSTEAD, they must prove beyond a reasonable doubt that the doctor KNEW/INTENDED that the Rx was outside the legitimate bounds. What matters is the prescribers knowledge and intent.

    Here is the ruling of the Supreme Court Ruan case. Here are some comments from the lawyers who worked so hard to 

    Some comments about the case from Ron Chapman:

    Many#cpp are wondering what this decision means for them. Simply put, it will be harder to prosecute physicians for medical judgment. We won’t see immediate effects but over time we will get there.

     Jennifer Oliva:

    Once a doctor proves that they are authorized to prescribe a controlled substance (e.g., has state & federal registration), the government must PROVE BEYOND A REASONABLE DOUBT that doc KNEW or INTENDED that their prescribing conduct was unauthorized under the CSA This means that the doc must have known or intended to prescribe outside the legit bounds of medical practice. Not enough for DEA to say "we think this is outside the bounds." Must prove that doc knew it was outside the bounds. Huge win.

    Kelly Dineen:

    This is such a tremendous outcome. Honestly, even the conclusion in the concurrence (which would have required a subjective good faith defense) would have been a win in itself. Amazing news for so many patients. Now we need to get word out to the prescriber.

    Kate Nicholson:

    Today#SCOTUS ruled unanimously in Ruan v. United States, that doctors authorized to prescribe controlled substances can only be convicted for violating the Controlled Substances Act when they intend or know that they are prescribing in an unauthorized manner. The opinion tracks exactly what we argued in our amicus curiae brief and could not have been better for people living with pain. The Court specifically rejects the view that doctors are criminally liable if their prescribing is not in accord with current medical standards. The difference is important, and especially so for doctors treating patients in pain, who might otherwise be deterred from meeting the needs of their patients by the fear that disagreement with their medical judgment would subject them to serious criminal liability. Indeed, Justice Breyer, writing for the Court, specifically singles out the chilling effect of overdeterrence and the importance of distinguishing morally blameworthy from socially necessary and beneficial conduct (i.e., prescribing medication for her patients). Justice Breyer writes, “a strong scienter [or mens rea] requirement helps to diminish the risk of “overdeterrence,” i.e. punishing acceptable and beneficial conduct that lies close to, but on the permissible side of, the criminal line.” The opinion also addresses the “vague, highly general language of the regulation defining the bounds of appropriate prescribing,” and the importance that providers not be convicted criminally for what is essentially negligence: As Justice Breyer writes, “the Government’s standard would turn a defendant’s criminal liability on the mental state of a hypothetical “reasonable” doctor, not on the mental state of the defendant himself or herself.” It is also important thing to note is the concurring opinion by Justice Alito, in which Justice Thomas joins and Justice Barrett concurs in part, concurs fully with the Breyer opinion that the appropriate standard is the subjective state of mind of the prescriber. The government had argued for an objective state of mind standard which we considered to be an oxymoron, and which no Justice agrees with.

    For an in depth explanation read the following:

    March 1, 2022 at 10am EST, Dr. Ruan's case was heard before the Supreme Court.

    We explained it all in detail here

    Attorney Ron Chapman created this post after the case was heard:


    "ORAL ARGUMENT IN RUAN V. UNITED STATES

    The Supreme Court heard oral argument today in the most important healthcare case since 1975, Ruan v. United States . While we were hoping for a glimmer of justice, what we got was a dizzying lesson on grammar, parsing of words, and speed limit analogies. But Justice Gorsuch in his gentle, fatherly cross examination style attempted to bring the argument for petitioners back on track by showing the nonsensical and circular nature of the Government’s argument.

    This issue before the Supreme Court is thoroughly addressed here and if you aren’t familiar go back and read that article first.

    Before we get into the oral argument its important to understand the changes in the case prior to the parties taking the podium. The issue before the 11th Circuit was the failure to give a “good faith” instruction which essentially permitted the Government to convict Ruan under a strict liability standard. The 11th Circuit believed that if his conduct failed to comport with the objective requirements of the practice of medicine then he should be convicted. Petitioners argued that if he subjectively believed he was following objective standards then he should be acquitted. The Government, straying from the 11th Circuit’s opinion pivoted in their opening brief and said that the physician must make an “honest effort to comply” with the objective standard of practice. This is where the train left the tracks. As Ruan’s counsel pointedly argued - the Government’s argument is a malpractice standard gussied up as an objective standard. The Government pivoted so hard that their argument appeared to turn in the direction of the petitioner, arguing that a subjective “honest effort” is enough. But instead of seizing on that juicy opportunity the justices questions sped past the issues at the heart of the case and turned into a confusing digression into the statutory elements of the offense.

    I’ll explain.

    THE INTENT COMPONENT

    21 U.S.C. 841(a) is a drug trafficking statute. It basically says that its unlawful to knowingly and intentionally distribute controlled substances. But an exception exists in the statute for licensed practitioners. Doctors, pharmacists, and other prescribers and dispensers are exempt from the statute as long as their conduct is “for a legitimate medical purpose in the course of professional practice”. In order to address whether the “good faith” of a physician is relevant the court needed to answer a threshold question and that is whether the intent requirement of the statute applies to the distribution or the exception. Thus, the question is: Does the government need to prove that the doctor knowingly and intentionally distributed drugs or does the government have to prove that the doctor knowingly and intentionally prescribed “outside the course of professional practice and for other than a legitimate medical purpose”. If the government needs to prove only that a physician intended to prescribe drugs then the only doctor who escapes this element is one who prescribes in a coma - as Ruan’s counsel pointed out.

    And so the court debated, for some time, whether the intent of the statute was to incorporate the prescriber’s exception as an element of the offense or an affirmative defense to the crime. If its an element, the the intent component must apply to the exception if its not then the intent component only applies to the distribution. Justice Alito seemed to think that the intent element is only related to the distribution and Gorsuch seemed to think that its related to the prescriber’s exception. The other justices didn’t offer much of a position but it seems that Breyer and Alito favor applying it to the distribution because failure to do so creates a statute with two separate intent requirements - one for prescribers and a separate for the general public. Breyer and Alito likely believe that such a reading frustrates the intent of congress in creating the statute.

    ONE GLARING OMISSION

    But in all of the heated debate surrounding the statutory text of the Controlled Substances Act, the Court and the parties missed the most important issue in the case, and all physician prosecutions. Both the Government and Petitioners conceded in their briefs that the standard applied in such cases is an objective standard of practice- which is incorrect. Both United States v. Moore and Gonzalez v. Oregon clearly state that the Federal Government lacks authority to regulate the practice of medicine. The Government only has authority to punish physicians who act so flagrantly that their conduct can be seen as “drug pushing”. And so, the Government’s proof that a physician’s conduct departed from some sort of “objective standard of care” amounts to mere malpractice and something for State Boards to consider - an issue hinted at in Justice Thomas’s final question. Petitioners should have taken the position that the standard of care is relevant in physician prosecutions only to show the jury the reasonableness of the physician’s conduct but in order for the government to fully satisfy the elements of 841(a) they must prove that a physician’s conduct departed so far from the practice of medicine that they ceased practicing medicine at all.

    For more on that point read my article “7 Dirty Words”.

    Instead of arguing this federalist argument, the parties were landlocked by the fact that the court granted Cert on the “good faith” issue which necessarily requires an argument regarding the intent elements instead of elevating above this crucial digression and discussing the authority of the Controlled Substance Act to regulate the practice of medicine generally.

    Tying an objective standard of care to the elements of an 841(a) violation is dangerous because (1) there is no consensus on what that standard actually is in the medical community, (2) it requires juries to grapple with complex and ever changing medical topics, (3) it allows the government and DEA to drive the standards of practice through CDC guidelines, “red flags”, DEA administrative decisions, and other unpromulgated guidance documents. This is dangerous because either subjectively or objectively the parties have permitted the government to take the position that violation of an invisible and ad hoc standard is sufficient for conviction in the first place.

    PREDICTION OF THE COURT’S DECISION IN RUAN V. UNITED STATES

    Predicting the outcome of a pending supreme court case is a bit like predicting the weather 30 days out - it ignores the dynamic interplay of the politics of the court. But I’ll take a stab. The Government abandoned the 11th Circuit’s rationale and the Court has no choice but to reverse the 11th Circuit and permit a good faith instruction or at the very minimum a proper instruction on the intent component of an 841(a) violation. It seems that at least five justices agreed with the fact that the intent requirement relates to the prescribers exception: Barrett, Gorsuch, Kavanaugh, Thomas, and Roberts. I think there are enough votes for reversal. But the tougher question is what relief, if any, can be afforded to doctors in the future given that both sides seemed to agree that an objective standard of practice is the standard in interpreting the phrase “legitimate medical purpose”. Kavanaugh seems to take the position that the statute is vague in the first place and may offer a concurring opinion and discuss vagueness unless he can pull the other four in his direction. But I don’t think he will be successful because of the politics of the Court. Determining that 841(a) is vague as applied to physicians will disrupt the balance of justice and require reversal of a lot, actually a ton, of convictions. And one thing we know about the Supreme Court is that it doesn’t favor such sweeping changes. Now this problem was set up by the Court in the first place in failing to address the statutory text since it was first enacted. Since 1975 we have been left without the voice of the court on this statute allowing the circuits to take differing interpretations and circuit splits as they grapple with the statutory text that was most likely written by a congressional staffer in 1970. But I do expect at least some comment on vagueness.

    In sum, I expect Ruan and Khan to get some sort of relief from this decision because the jury instructions in their case mis-applied the intent requirement of the statute and made drug trafficking a strict liability offense (like speeding) as applied to physicians. But I don’t expect a sweeping change here, I expect a tailored attack on the 11th Circuit’s reasoning and I expect that the Circuit Courts will pigeonhole the Supreme Court’s decision to prevent its broad application to all physicians convicted under the statute.

    There is some good news, potentially, on the horizon though. The Court has held the case of Naum v. United States pending the outcome in Ruan. This is a case where the federalism argument is very much alive. Its a case I have personally handled and if Cert is granted I will be arguing before the Supreme Court. We don’t know why Naum was held by the court but its likely because the Court didn’t want to address the federalism argument until it first decided the more minor issue of good faith and its application to the statutory text."

     

  • The VALUE Study - all of your questions answered

    Table of Contents:


    Introduction

    We've all heard "there is no evidence that opioids work long-term for pain."  This is where the VALUE study comes in. We have answers to your questions here. Much of this information came from an interview Jonelle Elgaway did with the directors of the study, Dr. Beth Darnall and Dr. Sean Mackey. The questions are answered by Dr. Darnall and Dr. Mackey.

    We also include a letter from Andrea Anderson answering some frequently asked questions including what you will encounter in the VALUE Study questionnaires, why they are there, and how you can respond comfortably. 

    What is the VALUE Study?

    We created the VALUE Study in partnership with people with lived experience to bring forward national data to describe the patient experience of those using opioid pain medications to manage long-term pain.

    The VALUE Study is an observational study, meaning we do not apply any interventions or change care in any way. Instead, we observe and collect information directly from patients through three surveys, delivered over one year, to help us understand the patient experience over this timeframe.

    Specific study details involve asking participants with chronic pain taking prescription opioids to complete three online surveys (at the beginning, or “baseline,” at 6 months, and again, at 12 months) and three brief phone calls with study staff. The surveys ask questions about pain, symptoms, pain coping, medication use, mood, sleep, substance use, general health, and well-being. After each survey, a member of the study staff will call enrollees to confirm their current medications over the phone and answer any questions that they may have. When they complete each survey, they will immediately receive an Amazon gift card.

    The study is entirely voluntary, does not impact medical care, and neither medical records nor prescription drug monitoring databases (PDMPs) are accessed. Participants may skip any questions they do not wish to answer. There are many free-text response fields so people can give us ample details about their experiences – an option that is often missing from “forced choice” surveys.


    What is the purpose of the VALUE Study?

    The VALUE Study seeks to accomplish two goals. The first is to address a series of questions about the long-term use of pain medications such as opioids. These questions include:

    • Whether prescription opioids help treat pain and if so, how much;
    • Whether patients experience stigma around receiving prescription opioids;
    • What problems people may experience with opioids prescribed for chronic pain;
    • Whether patients have difficulty accessing opioids that are prescribed to them;
    • Whether or not there are significant risks to the use of opioids when used long term, and if so, what they are;
    • Whether or not those using prescribed opioids for persistent pain develop problematic use or Substance Use Disorder, and if so, how often.

    The second goal is to bring forward the patient voice and experiences about prescription opioids to inform future research and care. The patient experience is often not included in research on the long-term use of pain medications such as opioids, which is a major limitation in our understanding.


    Who can enroll in VALUE?

    Anyone taking daily prescription opioids at a minimum dose of 10 morphine equivalent daily doses (MEDD) is invited to participate. Enrollees do need to be English-speaking and cannot be pregnant. We do the opioid MEDD conversions and calculate the MEDD amount for enrollees.


    What will be done with the information that they collect?

    First, to be included in the VALUE Study, we will need to obtain consent. This consent will outline our use of health information for research purposes. That consent form outlines the details of how the information will be used.

    We will combine the data and analyze the full sample. Then we will also look for subgroups of people and describe them. One of the problems today is that all people/patients with chronic pain are grouped together without appreciation for individual conditions or circumstances. This leads to flawed conclusions that are not only reductive but can be wildly inaccurate for particular subgroups. Subgroup analyses are sometimes done but rarely include information derived directly from patients. Rather, it often is pulled from medical charts or health insurance claims data. Our goal is to bring forward the patient voice and experience, to conduct the most rigorous study possible (while maintaining anonymity) and to publish the results academically and publicly. 

    Briefly, each enrollee’s (i.e., participant’s) data is stored in secured servers maintained by Stanford University. Individual information is not reported or shared outside the study team. Participants are assigned identification numbers in the dataset and all data are coded numerically without names. Your information will be combined with hundreds of other people from around the U.S. We will create an aggregated report on the patient experience. Patients can use a pseudonym if they wish. However, they will need to remember their pseudonym because the study staff will call them three times over the 12-month study and ask using the name provided to us. We will not be accessing any medical records or the state prescription drug databases.


    Why is this study (and others like this) so important?

    The patient voice has been lacking from research on opioids. Further, few studies have examined patient stigma and patient difficulty accessing opioids. Finally, we are conducting a national study and will have the ability to understand what patients are experiencing across the country.

    Sometimes we hear patient skepticism about researchers collecting patient data. However, we cannot address problems if we have poor or no data. Without data, the problem does not exist in the minds of policymakers. When it comes to policy, data is vital. We must provide patient data if we wish to change practices and policies on pain care in the U.S. We have worked closely with patients in designing this study to best ensure privacy protections and anonymity in every way possible.

    Over 15 years ago, we were intrigued that we had little data on the long-term use of prescription opioids to treat chronic pain. We had patients in our clinics that clearly benefited from opioids, and we had patients that clearly did not. And yet, we had little data to allow us to distinguish these groups of patients to help guide shared clinician-patient treatment planning. While this question of the benefits of long-term opioids is recognized by many, including the NIH, we have noticed less interest in answering this question by funding agencies and researchers. Instead, we see a focus on non-consensual tapering off opioids, believing that opioids play no role in chronic pain—a belief not grounded on quality data. We want to help answer this critical question (and the others we listed above). We need the patient’s help and experiences. We want to better understand the role of long-term prescription opioids to manage chronic pain at both the individual and group levels from our research. This information can help better inform clinical guidelines and policy decisions around the use of long-term opioids to treat chronic pain. Without this data, decisions will continue to be based primarily on beliefs that may or may not be accurate.

    We have endeavored to create a study that truly brings forward the patient voice and experience. If patients wish to have their experience count and their voices heard, VALUE (and other studies like VALUE) present such an opportunity.


    Some are concerned the information they share will be used against them. Is that possible or will their info. be protected?

    We appreciate the concerns that people have about their data and take data security and access seriously. The data use will be restricted to the study principal investigators and the study staff. We will not be releasing any individually identifiable data to other parties. To provide some context, between Dr. Darnall and Dr. Mackey, we have over 40 years of human research experience and collected data on tens of thousands of research participants. To date, we have never released individual data to any person(s) or groups outside the research study team. Over more than 20 years, Dr. Mackey has had perhaps two to three requests from study participant’s attorneys to allow them to review their research data to help the participant “prove” they had chronic pain. Dr. Mackey has even refused these requests as they are outside the research scope of this data. Beyond these few requests, neither Drs. Darnall or Mackey have never been asked to turn in any private data, nor have they.


    From where did the funding for VALUE originate?

    The funding originated from the Patient-Centered Outcomes Research Institute (PCORI), as a part of large research award given to Stanford University under principal investigator Beth Darnall. The original award is for the EMPOWER Study, which is a voluntary patient-centered opioid reduction study. This study helps people who wish to reduce their opioid doses do so gradually over the course of one year.

    Sean Mackey conceived of the idea of VALUE, in part because everyone in EMPOWER is voluntarily tapering and we did not have a parallel group that was continuing opioids. We wanted to be able to report upon what happens when people continue opioids and remain stable. As we went along, we realized that there was so much forced tapering in the U.S. that, in part, we needed to study that phenomenon as well. Dr. Darnall recognized the growing need to include these patients’ voices in research, particularly on this topic and expanded the project's initial scope to include that experience.


    Who are the principal investigators involved with this study?

    Beth Darnall is the overall principal investigator for the EMPOWER research award. Sean Mackey is the director of the VALUE Study. While the initial conceptualization for VALUE was his idea and he is leading it, it has evolved to include more of the patient’s experience through the collaboration with Beth Darnall. As a side note, we find that through cross-disciplinary collaborations such as ours (e.g., a physician-scientist working with a psychologist-scientist who are both working with patient advisors), more impactful research can be conducted.


    If I enrolled what can I expect? Clarifying some confusing regarding the VALUE Study

    A letter from Andrea Anderson, answering some frequently asked questions:

    "Due to some concerns and confusion about a few questions in the VALUE study, I wanted to take this opportunity to explain what you will encounter in the Value Study questionnaires, why they are there, and how you can respond comfortably. 
    This study, funded by the federal research organization PCORI, required us to include 4 different questionnaires from several other federal agencies. All 4 of those questionnaires are about different substance use/misuse from alcohol or types of substance use/misuse/abuse. These 4 agency questionnaires are often repetitive because they have similar questions. However, the funders of the study required that we use those questionnaires, and we cannot change the wording of those questions. This is because in federal research, all researchers have to use the same standardized questions so that comparisons, replication, and analyses are possible by others. 
    I want to assure you that you can skip any question you don't want to answer. if a question is poorly worded or difficult to answer, you can always just skip it. Doing so won’t hurt you or hurt the study in any way. You’re not obligated to answer the same question over and over, which can be irritating. There is also nomenclature about drug use that comes from a substance misuse perspective. You might encounter a question such as, “do you think about your drug use often?” You can skip it, or just answer truthfully. E.g., If the answer is, “no, I don’t,” then just answer it that way. That’s what I did. 
    Last, there is a free “text box” provided at multiple sites throughout the study. In those “free text” boxes, you can provide feedback and/or answer questions that were difficult to answer in the actual questionnaire.
     
    For example, there is one compound question that asks about two subjects, constipation and something else. There’s no way to answer it easily. I have talked with the study designers about it, and I believe they tried to add some clarifying language, but we can’t change the question for the reasons I gave above, as well as being unable to change questions in the process of an ongoing research survey. 
    You can use the free text box to write an answer in your own words.
    If you have any questions, please feel free to ask Vicki Bright

    Thank you so much for your participation! We all appreciate you so much. 
    Warmly,
    Andrea"

    Content created by Bev Schechtman on August 6, 2022

  • US could loosen some restrictions on prescribing opioids

    US could loosen some restrictions on prescribing opioids

    CDC considers rolling back limits on which doses can be prescribed and for how many days in cases of acute pain

    The US could see loosened guidance around prescribing opioids, as the US Centers for Disease Control and Prevention (CDC) considers relaxing some of its guidelines in a move that could signal a new direction for managing chronic pain.

    The CDC last Thursday released proposed changes to its guidance on prescribing opioids, rolling back limits on which doses can be prescribed and for how many days in cases of acute pain.

    The agency created rules in 2016 to reduce prescriptions that were fueling the opioid overdose epidemic. But as rules like these were put in place, opioid overdose deaths rose instead of falling.

    New laws in several states were drafted to codify the restrictions, and some insurers began basing their coverage of medications on the guidance.

    The sweeping actions cut off medications for some patients battling chronic pain and substance disorders, sometimes without the option of tapering down the medications or undergoing substance dependence treatment.

    As the sources of medications dried up, some patients turned to illicit substances like heroin and fentanyl.

    “You’re inadvertently driving people to an illicit supply if they’re being cut off,” said Kate Nicholson, executive director of the National Pain Advocacy Center. “The street supply is so tainted that you’re really pushing people to a very dangerous thing.”

    Fatal overdoses rose from 63,000 in 2016 to more than 100,000 last year, many of them driven by the powerful synthetic opioid fentanyl. Deaths from fentanyl have doubled in the US in the past two years – but teens in particular have been hit hard by fentanyl overdoses, with the death rate tripling in that time.

    Yet harm reduction groups have struggled to access affordable naloxone, the drug that reverses opioid overdoses. And only one state, Arizona, had enough naloxone in 2017 to prevent a majority of overdose deaths, according to a study published in the Lancet on Thursday.

    ‘It was being used against me’

  • Where's the Patient's Voice in Evidence-based Treatment & Research? Pharmacy Podcast Network

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

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

    Pharmacy podcast 2

    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 

The Doctor Patient Forum

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