It has become apparent that there is no SAFE SPACE for chronic pain pts… NO ONE can keep their head low enough not to be noticed. Chronic pain pts… even when they get adequate pain management therapy have DOUBLE THE SUICIDE RATE of the rest of the population. With relatively stable pain pts having their pain management meds reduced again and again with the apparent goal to eliminate the pt getting anything other that OTC pain meds… We are seeing the suicide rate of chronic pain pts increasing and we don’t know how many are committing suicide that never get anyone’s notice – other than the immediate family. We don’t know how many are dying from health complications of having to deal with unrelenting – torturous – pain levels.. like hypertensive crisis, strokes and subsequent death that is classified intentionally or unintentionally as a cardiovascular event to avoid stating the real reason for the death.
The Medical Licensing Boards and Pharmacy Licensing Boards are turning a blind eye/deft ear to the fact that many different non-medical entities are over writing or rescinding their respective licensees’ authority that is granted by the state’s practice act. The practitioners on these various boards do not seem to have the back bone or the balls to tell these various entities to BACK THE HELL OFF…
I know for a fact that the DEA is FORCING pharmacists to do things that they are neither trained to do … nor does the state’s practice act gives them the legal authority to do and the various Boards of Pharmacy – who’s primary charge is to protect the public’s health & safety… are DOING NOTHING.
We have seen what has happened to pts that have complained about their pain meds being reduced… often… the prescriber fabricates some “lame reason” for discharging the pt. It is no wonder that most/many/all chronic pain pts want change but don’t want to have their name or fingerprints on what it takes to make change happen.
HOWEVER, this is where the spouse of the chronic pain pt can possibly get the attention of those who are dictating the chronic pain pt’s proper care. Most claim that they are just following the CDC guidelines… but.. in reality they are just following the MOST STRICT portions of the guidelines. Here is a link and quote the the published CDC guidelines for primary care prescribers… they do not apply to chronic pain specialists:
Here is four quotes from the CDC opiates guidelines:
https://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm
“The guideline is intended to ensure that clinicians and patients consider safer and more effective treatment, improve patient outcomes such as reduced pain and improved function.”
“Clinicians should consider the circumstances and unique needs of each patient when providing care.”
“Clinical decision making should be based on a relationship between the clinician and patient, and an understanding of the patient’s clinical situation, functioning, and life context.”
“This guideline provides recommendations for primary care clinicians who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care.”
When a otherwise stable chronic pain pt is facing their pain medications being reduced, which has/will cause the pt to be in increased level of pain and becomes house, bed, chair confined. This is the point where a spouse can send a certified letter – or hire an attorney to do it – put the prescriber, and the legal dept of the prescriber’s employer (hospital), insurance company, pharmacy on notice that the spouse is concerned about the chronic pain pt’s health/safety… remind them of increased chance of suicide and that other documented health issue could deteriorate… and any that could lead to the pt’s premature death.
If the prescriber ignores the letter, then the spouse would have the ability to file a complaint with the appropriate licensing board for unprofessional conduct for failing to follow “best practices and standard of care ” of the CDC published guidelines. Also unprofessional conduct for failing to follow their Hippocratic Oath of “doing no harm”.
If this causes the various entities to discharge the pt… then there is the potential for justification for a lawsuit for retaliation, pt abandonment, pt/senior abuse, and other issues…
If the pt ends up committing suicide or dies from complications… then there is the potential for assisting/contributing to the suicide and/or premature death… and lawsuit by the spouse and children on loss of companionship and other issues associate with the loss of a spouse or parent.
Right now, most/all healthcare professionals have no fear of pts… they can discharge for fabricated issues, reduce their pain medication without concern… it is something like the “school yard bully” that goes about doing as he pleases without any fear of retaliation or consequences. Maybe it is time for that to change ?
Filed under: General Problems
Thank you Pharmacy Steve for all that you do for us pain patients, knowing there is PP advocates like yourself keeps me going.
PP’s it’s not enough to tell your story on these blogs, you must stand up and fight for our right to a decent life. There truly is power in numbers, don’t underestimate yourself, if you don’t know how to work social media, you can learn how to tweet, go on Facebook, or any other social network that you want. It’s taking me awhile but I’m learning how to do it. If I can do it anybody can do it, I’m serious, I didn’t know how to text or anyting.
I recently wrote a letter to http://www.whitehouse.gov
I put CDC guidelines in the subject box. I got a message back from Sandra Cashman, MS executive secretary, Office of the chief of staff, CDC
Surprisingly, here are some of the things she said.
(In treating chronic pain, physician should continue to use their clinical judgement and base their treatment on what they know about their patients.)
(The guideline DOES NOT support involuntary tapering)
(The guideline IS NOT a rule, regulation, or law.)
(The guidelines is a set of voluntary recommendations)
(It is not intended to take away physician discretion and decision-making)
We have to fight and fight hard, most of us know how ugly this world is.
My suggestion is, write a note to http://www.whitehouse.gov This website is supposed to be to the president. Keep it short as possible so they read it. The CDC and PROP started this mess with their guidelines. Then State Licensing boards, DEA, FDA, VA, CMS, ect. all jumped on board making it something it’s not.
I’m an intractable nerve pain patient, with several other nasty issues as well. My pain medicine has been cut byr2/3, so I’ve been down 100 miles of bad Road over the last 2 years. Suicide was going to be my easy way out. Then I started thinking about my kids and grandkids, what happens to them if something bad happens to them. I can’t have that. So I am determined to change what’s happening in America today.
Best wishes to all
David W Cole
(It
It’s crazy, so the CDC updated their “guidlines for treating chronic pain and using benzo together, discouraging the combo in patients receiving opioid medication
Guidlines for pain patients
In 2016, the Centers for Disease Control and Prevention (CDC) issued new guidelines for the prescribing of opioids.8 They recommend that clinicians avoid prescribing benzodiazepines concurrently with opioids whenever possible. Both prescription opioids and benzodiazepines now carry FDA “black box” warnings on the label highlighting the dangers of using these drugs together. People being prescribed any medications should inform their doctors about all of the other drugs and medications they use, and patients should consult with their doctors about the potential dangers of using various medications and substances together, including the use of alcohol.
THEN an update for addicts
-20-2017] Based on our additional review, the U.S. Food and Drug Administration (FDA) is advising that the opioid addiction medications buprenorphine and methadone should not be withheld from patients taking benzodiazepines or other drugs that depress the central nervous system (CNS). The combined use of these drugs increases the risk of serious side effects; however, the harm caused by untreated opioid addiction can outweigh these risks. Careful medication management by health care professionals can reduce these risks. We are requiring this information to be added to the buprenorphine and methadone drug labels along with detailed recommendations for minimizing the use of medication-assisted treatment (MAT) drugs and benzodiazepines together.
Seems logical right?
As a health care provider and a chrinic pain patient I have underatanding from both sides of the problem. One of the biggest issues is that the state medical boards have taken the CDC recommendations and adapted them into law for the individual states. I am a licensed provider in the state of Virginia. The Virginia board of medicine issued emergency rules for providers that made the guidelines not just recommendations but LAW. Any provider that dors not comply with the new laws will be investigated and lose their license. Anyone with a DEA number that gives them prescribing privlediges will lose their licence to practice and their prescribing privilegedes if they do not follow these laws. They are not just recommendations as the CDC intended. The medical providers are not voluntarily reducing patients medications. They truly have no choice. I would recommend that patients should start by making formal complaints to their state medical board. The medical boards are the ones who have turned these recommendations into law. Medical providers hands are tied. Please go online to the medical board of your state and read the rules for providers in your state. Then stand up and make a formal written complaint to that state board of medicine. That is the only hope that I can see making a difference at this point. The boards are required to investigate all patient complaints. Maybe if we flood their limited resources with pain patients they will get the mesaage. Please dont beat up your health care provider. They are doing the best they can with the rules forced upon them. Most of us do not agree with these laws and just want to help people have a decent life. I want a decent life and need mediciation that i cannot get. I want my patients to have the best life they can and I legally cannot give it to them. We are all afraid that we will lose our license or worse…..end up in prison. Something has got to give.
Apparently your medical board and others have not heard about the civil rights violation for discrimination under the Americans with Disability Act and Civil Rights Act.. Normally it is consider any law/rule that violates existing laws is generally considered UNCONSTITUTIONAL… and since all those chronic pain pts are consider disabled… and Medicare & Medicaid have similar rules about discriminating against pts.. Maybe the docs in Virginia should do a court challenge as to the constitutionality of that medical board regulation.
I agree completely and hope every day that someone will begin a class action for us. I’ll share this where I can. Hopefully, word will get out about what’s happening and everyday folks will begin to care, when it hits closer to home.
Yea, in Maine they have done this to the strictest point. If you are not “dying” you get nothing! Cancer patients, no longer get anything to help them control pain UNLESS they are at the very end of their battle… It is heartbreaking! Cruel! Uncalled-for treatment… Disturbing to see what this country is doing.
For anyone who has suffered indignity at the hands of these doctors who refuse to prescribe an opioid…would it not be prudent/possible to bring a class action lawsuit against the DEA and the doctors you pay good, hard earned money to, for promoting this new war on drugs? This is quite frankly, beyond belief, except that it is all too real as I myself have lived the nightmare. I too have had encounters with doctors like this, and gone home empty handed, crying my eyes out, contemplating suicide. 2 doctors have tried to kill me off, yet, I am still here by the grace of God. This enrages me so badly, 2018 is when I become more vocal in this insane war on our sick and elderly/ I believe the DEA is trying to save face on this crooked “war on drugs”, but they are certainly going about it the WRONG way. They flat out lied to us about marijuana, so now they come after prescription opioids. Opioids have always been a schedule 1 controlled substance, EXACTLY what changed? Why the war on legitimate pain patients and their doctors? Is the DEA trying to save face on the BS war on drugs? One can only hope that the policymakers behind this should suffer in pain at least once in their lifetime so as to get a taste of what others live through on a daily basis…maybe they won’t be so quick to judge others! Somebody is getting rich off this, problem is, I can’t exactly pin down who would benefit monetarily because of someone else’s suffering…this garbage has too stop NOW!! A class action lawsuit I say, against our own government!! Molon Labe!
All those who are choosing to ‘practice medicine’….without a license should be ARRESTED! Physicians choosing to cut paitients meds, taper or fire…should be sued for Fraud as they have billed insurance companies …across state lines. Coding and other intentional inaccuracies to records should be addressed as well. I worry about us all. I would like to put in my 2cents. To be clear, they are and have been screwing CANCER patients as well….. I have been fighting stage III IDC B/C with 27 nodes removed and they stopped counting at 7 Positive, also blood flow thru tumor(s). I am on a daily treatment and I have been told I will require an Oncology team the rest of my life. I was told I will never be in remission, or cancer free…the cancer in my case is considered chronic. My point is…I had bi lat mastectomies 18 rd chemo, 38 rads Treatments….required neupegen (Neulasta) injections to jump start my bone marrow (cause marrow to swell) for blood cell production.I have grevious pain still from severe contractor issues, neuropathy from chemo and bone pain from radiation, plus chest wall pain and scar tissue that has grown around my left side on & in my rib cage. The muscle damage and torn muscle along with severe pain. I had to BEG, BEG and BEG for Pain Meds. I was already a pain paitient with only one Pain Physician for 15-18 years…for chronic pain from Migraines since I was a child, made worse from 3 separate battles with Menengitis which left pressure points, I have an undiagnosed movement-jerking disorder which during chemo was completely alleviated only to now having returned, Pat/Femoral disorder, Patellar tracking disorder, disk degeneration, Ulna nerve compression/ transposition pain from compression damage, Osteo Myellitis (at 38) Lower left mandible- removed 1/2=3/4lower left side. Bone scraping, eventually bone and synthetic grafting required. 6 weeks of IV meds daily and septicemia day before port in chest was to be removed. Major bone pain and nerve pain.oh and Fibro…I trusted him (pain doctor) he did over 35 blocks and was paid a fortune. Then he retired at 50. I was turned over to who took over his practice, she is smart but has no comapassion….she is bringing me down to NO meds with tapering. Doesn’t matter how much pain I am in. She refuses to talk about ‘quality of life’ issue. For crying out loud…I underwent my first really difficult surgery at age of 2 1/2 years, I woke up mid surgery. I metabolize medication quickly. Now recently dx with PsA /AutoImmune disease. My Rheumatologist believes I have gone undiagnosed for many years (20+). While enduring chemo was forced off of meds…cold, not all but I am now tapered to just enough to sit up and hurt or lie down and hurt severely. They are screwing everyone and I am fearful that the stats are skewed and suicides and pain related deaths will increase. I have many many allergies, meds and foods…I have been grown into a SeraStorm because a Physician would believe me, as to allergies. I know what has been of use and what has almost killed me…that makes me a drug seeker. I wonder are there any other physicians/ specialist who require their patients -(who pay them) to sign a document/ contract (signed on the spot…no attorneys advise. NOW or be discharged today) stating that they can fire their patient, stop the medications, have the police show up at their door & search their homes do repeated UA’s etc. ? Oh yes and I forgot …you CANNOT ask for any second opinion, not one …that would be viewed as DR shopping …not for medical advice.
We are now being persecuted after years of being told you should be engage and proactive in your health care! Ask questions, tell the doctors what they need to know about you & ask what you need to know, feel free to get a second opinion. Now we are seemingly wrong no matter what we do. My sister recently made a comment, to the effect of … What is this; ‘The Purge’? Yes, it feels something like that….forgive me for typos, disjointed info…fog today- everyday , oh yes that due to all of the meds I am on (not anymore…but I guess they think that sounds good) Don’t dare seek help for that either…..
I was hurt the other day to read where someone was being treated terribly and the comment was made ‘I never thought I would be envious of a cancer patient’. We are all in this…
Oh Melissa, I’m so sorry you are suffering and are being treated so poorly. I too am a cancer survivor of twenty years, with a type that never gets called cured, and am in pain mgmt due to the immediate and long term effects of the chemo and radiation. I’m.Also being subjected to forced cuts against my will and without consent. There are no laws in my state before or after the cdc suggested these guidelines for PCPs , that would affect my pain care, but it’s being given as a excuse and justification for the cuts. It’s absolutely harming my health and will most certainly take years off my life. I just want to say that you aren’t alone and very correct to point out that cancer patients can’t bet adequate pain medication either. The term “active cancer, used by cdc, is absurd. For me, the cancer itself, with tumors ranging between grapefruit to marble size, was merely uncomfortable. The resulting long term pain from the nerves, bones, muscles, skin, etc….has been far worse, for me, than the cancer itself, when the cdc would have called it “active” cancer and allowed or not sought to limit pain medicine. I understand this isn’t true for all cancer or all cancer patients, but it’s true for me. And let me also say that being bald sucked as young woman, but at least I was treated with respect and empathy when I went to the pharmacy. This is not the case now that my hair has grown back. I’m the very same person, but now I’m treated poorly. I’m looked upon as drug seeking addict, when I go to fill the same prescription from pain mgmt that I have filled for two decades, but now at a reduced less therapeutic amount. Thank you for speaking up and sharing your experience. I pray this changes for us and everyone suffering now, and everyone whoes suffering is yet to come. Keep up the fight, and when you don’t have it in you, know we are fighting for you.
Thank you for this guide. I was just cut by half on my pain medications, I have been very sick for years, I have a form of (severe and quickly progressive in my case) autoimmune systemic arthritis that attacked my lungs and caused lung disease by age 32, in almost 37 now and I also have the incredibly rare neurological condition known as hemiplegic migraine.
I am going to die from the lung disease and likely not very far off, I had a few years at best, BEFORE the change in medication status and they plan to cut me more next month. Despite my health issues, I was previously STABLE on the medicines that were allowing me to at least get out of bed and still leave the house on occasion, at least I was SLOWLY getting worse, now I will quickly deteriorate in front of my husband and 12 year old son who is on the spectrum, both of which will be forced to now care for me 24/7. Now, with the change I will be wheelchair and bed bound and the shock of this kind of SEVERE pain could cause a crisis in my already failing heart as well as my migraine disorder which I can expect to get even worse.
The pain is so severe, even breathing is excruciating. Not just because of the tissue level lung disease but the mechanical lung disease due to my spine fusing via the arthritis. Basically, the pain in my spine & ribs just breathing takes my breath away and leaves me in tears without adequate pain relief. I am almost certain that I’m already in heart failure due to the lung disease which is a common development in patients like me with organ involvement. I thought I would be safe because of how close I am to end of life but I was wrong. I was told that I was “too young to be on this type and dosage of medication” but I’m not too young to die. Please follow my video diary. I will be posting daily to show the progression.
I hope to raise awareness by showing the intimate daily details of what it’s like to live and die with autoimmune disease. It may not be cancer, but it’s JUST AS SEVERE sometimes it’s more severe and people die from autoimmune disease and pain every day. Non cancer pain is STILL PAIN. The medical community must STOP thinking about non cancer pain as somehow less severe than cancer pain. It’s absurd and it’s stupidity to believe non cancer pain to be somehow less valid or destructive.
https://www.pscp.tv/w/1lPKqpApDvAxb
Dez my heart breaks for you and so many others! I have often wondered why only cancer patients are the only ones who should have pain control. “Moderate ” pain that NEVER ends is just as debilitating! I wonder what the next group of people will be chosen for torture and genocide?
They’re even cutting cancer patients now. We have reached total insanity. I’m working to help build a nonprofit advocacy group for patients and doctors. Hoping we can effect some change in this insane response to the so called “opioid crisis”. I hope you are doing ok my friend. <3 Dez
I’m an Aussie and I know how you feel. I have a terminal lung disease and I just want to live a bit before I die but thanks to an American doctor who scammed me yes no ethics so he can sit looking at the view of Sky needle while I am dying. So much for helping someone I was told to go kill myself. Really nice people lang and pearl Davis Seattle
So sorry Suzanne. There really are no words. This is a genocide and no one is paying attention but us. There is a special place in hell for all of them and for once, I don’t feel bad about that.
Bingo,,and absolutely IVE HAD ENOUGH,, I wish I could attach something I found yesterday,,it is exactly what Steve is saying,,a consultant firm telling doctors how NOT to pay claims,,how ,”chronic,” issue are the true cost to all medical insurers etc,,I AM TIRED OF IT!!!MARY