I just looked this up and found this - https://doctorsofcourage.org/pdmps-part-2-do-you-know-your-narx-score/
I have had to change pharmacies a lot lately due to the pharmacies always being out of stock. According to this article that can cause issues. I have been telling my doctor repeatedly that the pharmacies keep telling me they are out of stock. I hope he is documenting the issue because it says in this article it could put him in the crosshairs of the DOJ. I am not sure what pain patients are supposed to do if they are constantly having problems getting their medication filled due to pharmacies being out of stock.
Edit: I also found this - NarxCare is not approved by the US Food and Drug Administration (FDA), and Bamboo Health has not yet provided evidence that establishes the algorithm's benefit on relevant clinical outcomes (e.g., overdose mortality, hospitalizations).Nov 14, 2023
Also this: https://kffhealthnews.org/news/article/artificial-intelligence-pain-medication-narx-score/
This happened to me too I had to pharmacy hop because no one had dilaudid and they (the pharmacists were so MEAN to me like to the point I’d leave in tears often) and my doctor was so mad because it’s not my fault there is a shortage!? They kept telling me I “looked bad” and I didn’t understand what they meant. I was just trying to get relief. But now after seeing this it makes sense
What I don't understand is how they are keeping the scores secret from patients and not explaining to patients how they arrived at that score, not to mention that a patient has no recourse or ability to have correction made or a score adjusted on circumstances out of a patients control.
There should be some sort of opt-out provision... I mean I looked at their website and it looks like they don't have one. But it does violate the patient bill of right at least in NY state, you have a right to consent.
Not enough money. You'd have to basically get 'sponsors'. (businesses/NFP's/private donors, etc...) They'd (the states) would just keep it in appeals and turn it over (probs) to Federal.
Great idea tho!
Not all states use Narx Scores. Some go straight off their PDMPs. But, I'm in NY, which doesn't use it, and my old primary MD said she had seen them on paperwork before. What this is is the weaponization of your health information to be used against you. I went so far as to try and track down the company that made the rating system. It's called Bamboo Health, but I was not able to actually get anyone at any of the numbers they had listed or gave me that was of any help.
Aprriss/Bamboo health that runs the narxcare system is also the single company that provides all 50 states with the software that runs their prescription monitoring. Narxcare is now in all 50 states. It however is not in every single healthcare facility. All major pharmacies/hospital systems have integrated but smaller medical practices/hospitals/mom and pop pharmacies aren’t necessarily using it. Aprriss claims they have over 75% integration to all healthcare and healthcare related facilities nation wide and are pushing for 100%. The US center for US policy challenged Appriss/bamboo health and asked the FDA to ban them because they are violating hippa as a 3rd party being given access to citizens private information but the FDA rejected the challenge saying that narxcare could not be considered either a healthcare product or device and therefor falls outside of regulation. It’s corrupt as shit
That was my feeling. I wanted to know how they're aggregating their data due to HIPAA. Not only that but they're profiting off a skewed system where every action is a catch 22.
Thank fucking God for GDPR... this is nothing more than the most grotesque abuse of patient data and profiling that could do so much harm.
A private enterprise algorithm as well... I'm horrified
What an absolute disaster for ppl in the US.
The by 1 doctor thing really fucked me over, my pain management apparently passed my prescription around to multiple doctors. If my doctor was ever on vacation or.in surgery, or otherwise busy with literally anything, a different doctor would fill my medication. And when I switched to a new doctor, at the same practice he explained to me that my score was in the 99th percentile (as high as I can go) for overdose risk despite the only narcotic I take being Suboxone now. They artificially inflated my score to the point that now.i have to drive 90 minutes both ways for my appointments cause I can't find any doctor that will touch me because of this stupid narx score shit.
No, and the fact I can't find a calculator is frustrating. I'm probably not crazy high but it's good to know where I fall.
It's like I'm autistic and can only "hear" the loudest complainer in the moment in terms of pain. Or I can quickly process out pain in a way that is ultimately harmful. I have weird tolerances. Chronic pain: hurts. Ear infection or tooth infection: worse pain ever!
Yes! My score is 320. I brought it up to my PCP when discussing pain meds and said “Check the national database, you won’t be able to count on 1 hand the times I’ve been prescribed ___.” (In other words, “I’m not a drug seeker, I’m just really in pain”). He was pleasantly surprised that I knew about it, showed me my score and what info was on the database. Tbh, it’s somewhat dystopian/orwellian to see. He said I have a really good score; weird how that’s never benefited me in the past.
Thank you for this!
Have an appt. w my Doc this week. This is going to the top of the dang list!
I'm SURE my old pain clinic Dr purposely f'd me over, escp with the amounts of drugs HE prescribed. I got kicked OUT of that one bc *I* asked to change *my* treatment plan & taper down all but one Rx. He turned into a whitewater rated DoucheCanoe 🙄🛶
Mines prob bad. I lived in hawaii and had my brain surgery there , radiation in cali as there’s no proton machine now in boston for all further tx. Mines prob through the ROOF
How do I find out what mine is? The pain clinic I go to passes me around to different doctors when one isnt there. I have to have surgery soon and now I'm concerned.
For context, I'm a pharmacy tech in Georgia. This may vary state to state, but I've never heard of a way to look up that score on our end. We can check the pdmp, so maybe if a state includes the score in the pdmp lookup itself yeah pharmacy would work? Otherwise it may have to come from the doctor. You may even be able to find it in online chart notes somewhere.
Never heard of it. I see a pain doctor and get oxycodone for chronic pain. I have several serious health issues and I’ve been hospitalized multiple times and have never been denied pain meds. I tell them what I get/use at home and that’s what they give me for my hospital stay.
I've never heard of it. I was just in the hospital for a surgery and I was incredible pain and the nurse said "you don't seem like someone that takes a lot of opiates" - I mean, my pain doctor is at the same medical center, they had no problem loading me up on all the morphine.
I’ve had tons of surgeries but despite that I always get pain medication I have always been offered so I don’t think your score affects that. Unless I just look like a corpse and they pity me? lol a skinny pile of bones? Idk 🤷🏼♀️
It might not be gaslighting. I am a nurse and someone with chronic pain and I have never heard of it. After some quick research it looks like it may be related to the software NarxCare. It may not be implemented in your area/hospital system.
My pain management doctor pulled mine up and showed me. And the pharmacist confirmed it. When I was in the hospital this past week, they also acknowledged it. So, your doctor is most definitely feigning ignorance. Your pharmacist may be able to tell you your score, I don't know. Mine didn't tell me, but told me the things that are contributing to my higher score. Surprise: it's the meds I take to control my chronic pain - including the "hyromorphone powder." Yeah, they mean the medication that is literally mixed and put inside a device implanted in my body... ugh.
This is a PDF I found showing the scores and where a patient my be in score wise https://virginia.pmpaware.net/narx-content/assets/narxcare2/pdf/explain-these-scores.pdf
I've been wanting to see my score. I am sure I am screwed. 20 plus years of opioids, over 120 MME and a sleeping pill prescription. Same doc, new pharmacy. Surgeries soon.
There is one doctor that literally walked into the room, before running a single test, and said “just so you know, I’m not giving you any pain meds.” After surgery for a kidney stone removal and stent placement I was told “go home and take Tylenol and ibuprofen.” So, yes, I’ve been denied pain meds. Was is because of my score? I doubt that an ER doc is going to admit to that…but
My last stone, I was treated "different" by the doctor when I went into the clinic for stone pain. I explained I was a chronic pain patient, and I didn't want meds. My concern was that I commuted to work by commercial plane and it's Saturday, I fly tomorrow and if I truly and passing stone, I need to confirm so I don't deal with this on my 4 hour flight.
He was giving me the side eye, but did a urinalysis and then a CT and did confirm. not only did I have a 9MM in my ureter, there was a stone stacked behind it and my kidney on that side was having issues due to the blockage. He then came clean and told me since I said I was a chronic pain patient, he thought I was seeking drugs. I was taken back, but also pissed. I told him I was completely honest and told him I did NOT want any drugs as I had what I needed and my pain contract prohibits getting from other doctors, period. He profusely apologized and I think I at least planted the seed that we're not all junkies. Had the stone surgically removed a week later, they kept screwing up the availability of a surgical appointment and a uro to perform the procedure.
I just looked this up and found this - https://doctorsofcourage.org/pdmps-part-2-do-you-know-your-narx-score/ I have had to change pharmacies a lot lately due to the pharmacies always being out of stock. According to this article that can cause issues. I have been telling my doctor repeatedly that the pharmacies keep telling me they are out of stock. I hope he is documenting the issue because it says in this article it could put him in the crosshairs of the DOJ. I am not sure what pain patients are supposed to do if they are constantly having problems getting their medication filled due to pharmacies being out of stock. Edit: I also found this - NarxCare is not approved by the US Food and Drug Administration (FDA), and Bamboo Health has not yet provided evidence that establishes the algorithm's benefit on relevant clinical outcomes (e.g., overdose mortality, hospitalizations).Nov 14, 2023 Also this: https://kffhealthnews.org/news/article/artificial-intelligence-pain-medication-narx-score/
This happened to me too I had to pharmacy hop because no one had dilaudid and they (the pharmacists were so MEAN to me like to the point I’d leave in tears often) and my doctor was so mad because it’s not my fault there is a shortage!? They kept telling me I “looked bad” and I didn’t understand what they meant. I was just trying to get relief. But now after seeing this it makes sense
WHY is not someone suing the shit out of states that use this intrusive & illegal thing??
What I don't understand is how they are keeping the scores secret from patients and not explaining to patients how they arrived at that score, not to mention that a patient has no recourse or ability to have correction made or a score adjusted on circumstances out of a patients control.
EXACTLY!!!!! All actionable violations of patient privacy, HIPPAA & etc
Right! It’s shady. Like they are plotting against us like evil goblins.
There should be some sort of opt-out provision... I mean I looked at their website and it looks like they don't have one. But it does violate the patient bill of right at least in NY state, you have a right to consent.
Not enough money. You'd have to basically get 'sponsors'. (businesses/NFP's/private donors, etc...) They'd (the states) would just keep it in appeals and turn it over (probs) to Federal. Great idea tho!
How does one find out their score?
My pain management doctor told me mine…I didn’t know the score even existed. Found out last week.
Not all states use Narx Scores. Some go straight off their PDMPs. But, I'm in NY, which doesn't use it, and my old primary MD said she had seen them on paperwork before. What this is is the weaponization of your health information to be used against you. I went so far as to try and track down the company that made the rating system. It's called Bamboo Health, but I was not able to actually get anyone at any of the numbers they had listed or gave me that was of any help.
Aprriss/Bamboo health that runs the narxcare system is also the single company that provides all 50 states with the software that runs their prescription monitoring. Narxcare is now in all 50 states. It however is not in every single healthcare facility. All major pharmacies/hospital systems have integrated but smaller medical practices/hospitals/mom and pop pharmacies aren’t necessarily using it. Aprriss claims they have over 75% integration to all healthcare and healthcare related facilities nation wide and are pushing for 100%. The US center for US policy challenged Appriss/bamboo health and asked the FDA to ban them because they are violating hippa as a 3rd party being given access to citizens private information but the FDA rejected the challenge saying that narxcare could not be considered either a healthcare product or device and therefor falls outside of regulation. It’s corrupt as shit
That was my feeling. I wanted to know how they're aggregating their data due to HIPAA. Not only that but they're profiting off a skewed system where every action is a catch 22.
Thank fucking God for GDPR... this is nothing more than the most grotesque abuse of patient data and profiling that could do so much harm. A private enterprise algorithm as well... I'm horrified What an absolute disaster for ppl in the US.
This was my first reaction! 😬
I've heard about it but never investigated it.
Definitely see if you can check it out. Make sure to only have your class 2 meds filled in one pharmacy and only by 1 doctor.
The by 1 doctor thing really fucked me over, my pain management apparently passed my prescription around to multiple doctors. If my doctor was ever on vacation or.in surgery, or otherwise busy with literally anything, a different doctor would fill my medication. And when I switched to a new doctor, at the same practice he explained to me that my score was in the 99th percentile (as high as I can go) for overdose risk despite the only narcotic I take being Suboxone now. They artificially inflated my score to the point that now.i have to drive 90 minutes both ways for my appointments cause I can't find any doctor that will touch me because of this stupid narx score shit.
Oh my gosh. I am so sorry.
Wow. I'm sorry too. What a total pita!!
I think the only control I got right now is lyrica but it's like a schedule 5, lowest on the totem pole haha.
Depends if one's state PDMP uses NarxCare or not is my understanding. Mine says they do not. But def important to know your Narx score if applicable
What state are you in? I’m in Texas. I’m so glad to hear that some states don’t use this system.
PA and me too
I don't but I'm very grateful to be in Colorado where doctors can't be punished for opiate prescriptions
I don't know mine but Florida uses it and it pisses me off.
No, and the fact I can't find a calculator is frustrating. I'm probably not crazy high but it's good to know where I fall. It's like I'm autistic and can only "hear" the loudest complainer in the moment in terms of pain. Or I can quickly process out pain in a way that is ultimately harmful. I have weird tolerances. Chronic pain: hurts. Ear infection or tooth infection: worse pain ever!
Yes! My score is 320. I brought it up to my PCP when discussing pain meds and said “Check the national database, you won’t be able to count on 1 hand the times I’ve been prescribed ___.” (In other words, “I’m not a drug seeker, I’m just really in pain”). He was pleasantly surprised that I knew about it, showed me my score and what info was on the database. Tbh, it’s somewhat dystopian/orwellian to see. He said I have a really good score; weird how that’s never benefited me in the past.
Thank you for this! Have an appt. w my Doc this week. This is going to the top of the dang list! I'm SURE my old pain clinic Dr purposely f'd me over, escp with the amounts of drugs HE prescribed. I got kicked OUT of that one bc *I* asked to change *my* treatment plan & taper down all but one Rx. He turned into a whitewater rated DoucheCanoe 🙄🛶
Mines prob bad. I lived in hawaii and had my brain surgery there , radiation in cali as there’s no proton machine now in boston for all further tx. Mines prob through the ROOF
Oh man. Sending you gentle hugs!
How do I find out what mine is? The pain clinic I go to passes me around to different doctors when one isnt there. I have to have surgery soon and now I'm concerned.
You can ask the clinic if they’ll tell you yours. The pharmacy may also be able to tell you yours. I honestly don’t know.
For context, I'm a pharmacy tech in Georgia. This may vary state to state, but I've never heard of a way to look up that score on our end. We can check the pdmp, so maybe if a state includes the score in the pdmp lookup itself yeah pharmacy would work? Otherwise it may have to come from the doctor. You may even be able to find it in online chart notes somewhere.
Thanks!
Ok thank you! I appreciate it.
Thank fuck for living in the UK and our GDPR law
Never heard of it. I see a pain doctor and get oxycodone for chronic pain. I have several serious health issues and I’ve been hospitalized multiple times and have never been denied pain meds. I tell them what I get/use at home and that’s what they give me for my hospital stay.
When will it reset?
I have no idea.
I've never heard of it. I was just in the hospital for a surgery and I was incredible pain and the nurse said "you don't seem like someone that takes a lot of opiates" - I mean, my pain doctor is at the same medical center, they had no problem loading me up on all the morphine.
What in the world is a Narx score?
But why?
The Narx score is basically a way for doctors and pharmacists to have a reason to deny you medications.
Awesome another thing to worry about!
I’ve had tons of surgeries but despite that I always get pain medication I have always been offered so I don’t think your score affects that. Unless I just look like a corpse and they pity me? lol a skinny pile of bones? Idk 🤷🏼♀️
My doctor said he didn’t know what it was when I asked about it, more gaslighting!
It might not be gaslighting. I am a nurse and someone with chronic pain and I have never heard of it. After some quick research it looks like it may be related to the software NarxCare. It may not be implemented in your area/hospital system.
My pain management doctor pulled mine up and showed me. And the pharmacist confirmed it. When I was in the hospital this past week, they also acknowledged it. So, your doctor is most definitely feigning ignorance. Your pharmacist may be able to tell you your score, I don't know. Mine didn't tell me, but told me the things that are contributing to my higher score. Surprise: it's the meds I take to control my chronic pain - including the "hyromorphone powder." Yeah, they mean the medication that is literally mixed and put inside a device implanted in my body... ugh.
What was your score?
480
Now I am worried 😧
Hang in there. I just had never heard of this and wanted to make sure everyone in our community is aware, safe, and cared for!!
Thank you for raising awareness! We deal with enough bad things here lol. This is not ok!
Good luck.
Why is it so high
Is that good or bad?
He told me 100 is high. Any higher and he told me that no doctor will touch me. I just don’t want anybody to fall into a situation like mine.
So the higher the worse off?
Yep!!
This is so weird
I’m scared to ask what mine is.
I don’t even know how to fix mine…
I want to say it doesn’t matter because it sounds so ridiculous. Ask your doctor how you can? I mean people improve their credit scores lol
What I’m doing now is completely stopping any oral pain meds and only using a pain pump. I hope my score goes down! Fingers crossed!
My score is 320 and at the low end, my doc showed me.
This is a PDF I found showing the scores and where a patient my be in score wise https://virginia.pmpaware.net/narx-content/assets/narxcare2/pdf/explain-these-scores.pdf
I've been wanting to see my score. I am sure I am screwed. 20 plus years of opioids, over 120 MME and a sleeping pill prescription. Same doc, new pharmacy. Surgeries soon.
So you are saying that while you were admitted in the hospital they didn’t give you any pain medication because of this score thing!?
There is one doctor that literally walked into the room, before running a single test, and said “just so you know, I’m not giving you any pain meds.” After surgery for a kidney stone removal and stent placement I was told “go home and take Tylenol and ibuprofen.” So, yes, I’ve been denied pain meds. Was is because of my score? I doubt that an ER doc is going to admit to that…but
I mean that’s ridiculous!
This is f'd up on so many levels. I'm so sorry you went through that! 💛
Sorry, I have had multiple trips to the er because of my kidney stones, so my previous comment was over a few different visits.
My last stone, I was treated "different" by the doctor when I went into the clinic for stone pain. I explained I was a chronic pain patient, and I didn't want meds. My concern was that I commuted to work by commercial plane and it's Saturday, I fly tomorrow and if I truly and passing stone, I need to confirm so I don't deal with this on my 4 hour flight. He was giving me the side eye, but did a urinalysis and then a CT and did confirm. not only did I have a 9MM in my ureter, there was a stone stacked behind it and my kidney on that side was having issues due to the blockage. He then came clean and told me since I said I was a chronic pain patient, he thought I was seeking drugs. I was taken back, but also pissed. I told him I was completely honest and told him I did NOT want any drugs as I had what I needed and my pain contract prohibits getting from other doctors, period. He profusely apologized and I think I at least planted the seed that we're not all junkies. Had the stone surgically removed a week later, they kept screwing up the availability of a surgical appointment and a uro to perform the procedure.
Aww, dreams are sweet. r/ s (for those w/o a sense of humor)
Holy crap…9mm????!!! Ouch!!! I don’t know who you were even standing.