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:
- Have the patient ask for the charge nurse.
- If you’re on the phone, ask the patient to put you on speaker so you can start a conversation with the charge nurse.
- Introduce yourself saying:
- “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.”
- “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?”
- Would you please contact the hospitalist, tell them the patient’s pain is unmanaged and he needs adequate pain relief?”
- “If the doctor is unwilling to put in an order for adequate pain medication, would you please tell me why?”
- 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.
- This is a time-consuming but necessary process.
- 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.
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:
- The number of prescribers a patient has had in a two-year period.
- The number of pharmacies a patient used in a two-year period.
- The dosage (MME-Milligram Morphine Equivalent).
- Amount of other medications that may increase potency of other medications.
- Number of times prescriptions overlap with prescriptions from other providers
- Any Mental Health Diagnosis
- 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?
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
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:
- Who enters your information into the PDMP? The pharmacist/pharmacy technician.
- 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.
- Who has access to your PDMP? Pharmacies, doctors, hospitals, and in some states veterinarians and law enforcement.
- 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
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?
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:
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.
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?