Forced Opioid Tapering Continues Despite Attempts by Pain Leaders

Forced Opioid Tapering Continues Despite Attempts by Pain Leaders

The whole idea of force opioid tapering and what it is doing to pain patients continues to rear its head.

This Monday, Nevada pain physicians are expected to descend upon the state capitol in Carson City and make the case that the regulation of pain management is a big issue that needs attention.

In Oregon, despite intense opposition from pain professionals across the country, The Oregon Health Authority is moving toward imposing a forced opioid taper policy for Medicaid patients in March. We’ll be reporting more on that in the coming days.

And to update you on a story on the National Pain Report story that ran last weekend, during the last week Vi Pfeiffer of Helena had her prescription reduced again this month—this time in half–the fourth straight month her long-time doctor reduced her prescription. The Pfeiffers believe this month will be the last that her physician will fill any OxyContin prescription for her.

These stories brought to mind the importance of printing a letter that was published in Pain Medicine late last year that called for “An Urgent Action on Forced Opioid Tapering”—action that isn’t happening, at least yet.

Here’s the text of the letter that was signed by recognized leaders.

We, the undersigned, stand as a unified community of stakeholders and key opinion leaders deeply concerned about forced opioid tapering in patients receiving long-term prescription opioid therapy for chronic pain. This is a large-scale humanitarian issue. Our specific concerns involve:

  • rapid, forced opioid tapering among outpatients;
  • mandated opioid tapers that require aggressive opioid dose reductions over a defined period, even when that period is an extended one.

Opioid tapering guidelines were created, in part, to decrease harm to patients resulting from high-dose opioid therapy for chronic pain. However, countless “legacy patients” with chronic pain who were progressively escalated to high opioid doses, often over many years, now face additional and very serious risks resulting from rapid tapering or related policies that mandate extreme dose reductions that are aggressive and unrealistic.

Rapid forced tapering can destabilize these patients, precipitating severe opioid withdrawal accompanied by worsening pain and profound loss of function. To escape the resultant suffering, some patients may seek relief from illicit (and inherently more dangerous) sources of opioids, whereas others may become acutely suicidal. Regardless of one’s view on the advisability of high-dose opioid therapy, every thoughtful clinician recognizes rapid tapering as a genuine threat to a large number of patients who are often medically complex and vulnerable. Indeed, even slower tapers should include realistic, patient-centered goals that are achievable and account for individual patient factors.

New and grave risks now exist because of forced opioid tapering: an alarming increase in reports of patient suffering and suicides within and outside of the Veterans Affairs Healthcare System in the United States.

Reports suggest that forced tapering is also occurring in patients on opioid doses below the Centers for Disease Control and Prevention Opioid Guideline threshold of 90 morphine equivalent daily dose. These patients too are at risk of harm from overly aggressive tapering.

Patients on legacy opioid prescriptions require different considerations and careful attention to the methods by which opioid tapers might be considered and implemented. Currently, no data exist to support forced, community-based opioid tapering to drastically low levels without exposing patients to potentially life-threatening harms. Existing data that support rapid reductions of opioid doses—often to zero—were conducted in highly structured, supportive, interdisciplinary, inpatient settings or “detox” programs in which medications and other approaches were used to minimize the symptoms of withdrawal. These data do not inform community-based opioid tapering. Currently, nonconsensual tapering policies are being enacted throughout the country without careful systems that attend to patient safety. The methods by which a taper is conducted matter greatly.

We therefore call for an urgent review of mandated opioid tapering policies for outpatients at every level of health care—including prescribing, pharmacy, and insurance policies—and across borders, to minimize the iatrogenic harm that ensues from aggressive opioid tapering policies and practices.

Almost 18 million Americans are currently taking long-term prescription opioids. We ask the Department of Health and Human Services to consider the following to mitigate harms in this special, at-risk population:

  • Enact policies that prohibit or minimize rapid, forced opioid tapering in outpatients taking legacy opioid prescriptions (this includes prescribers and health care organizations, pharmacies, and insurance payors).
  • Provide compassionate systems for opioid tapering, if indicated; that includes careful selection, patient-centered methods, close monitoring, triaging of adverse events, and realistic end-dose goals that are evidence-based and derived from applicable outpatient tapering data.
  • Convene patient advisory boards at all levels of decision-making to ensure that patient-centered systems are developed, and patient rights are protected within the context of pain care.
  • Require inclusion of pain management specialists at every level of decision-making about future opioid policies and guidelines.

In standing as a unified community of concerned scientists, experts, citizens, and leaders of pain organizations in our respective countries, we call for the development and implementation of policies that are humane, compassionate, patient-centered, and evidence-based in order to minimize iatrogenic harms and protect patients taking long-term prescription opioids.

To see all the signatories, (click here)

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Authored by: Ed Coghlan

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Lisa Hall

I had a near fatal car accident in 2004 I have been on pain meds for 17 yrs . It was oxycodone hcl an hydrocodone both all at the same time
Not to forget I was taking Xanax for 32 yrs . My Dr I have had for 6 yrs decided to taper me off . Bad thing is she took me off of everything. I have been sick an really wanted to die . It’s been 3 months an I can’t find a Dr to help me because everybody’s to sceard to write anything anymore. I’m in Tennessee and have Medicaid that pays for everything. All I can say to those Drs is BAD IDEA. Some Dr they are I thought that what the Drs oath said to help ppl. Any idea what I should do ?

Shelly

I’m in Texas and have same Pain Specialist that I was referred to by a Nuerologist and Orthopedic 17 yrs ago. I have a spinal disease that effects thoracic area and is progressive. Cannot fix surgically. I have been forced down from 120 mgs to 30 mgs. One said they show pharmacy and Dr the CDC guidelines are purely suggested- are you kidding me?!? We ALL know CDC was a scam with Drs who have zero background treating pain, pushed into doing something by our lovely president and other political geniuses. Tell thus to the DEA who continue going to MY PAIN DRS office threatening the patients with big posters claiming under 90mg but all pain Drs who are still allowed to KEEP their license are below 50mgs. I feel like hitting the heroin. I see why others say screw it and jump. I once HAD a functioning life. Now I work but am in pain a great deal through the day. I’m looking to sell my home and just not work. YOU CANT FIGHT the DEA. So let them say it’s just suggested guidelines. It’s BS. DEA doesn’t care. They continue to harass the Drs who still have nerve enough to offer what very little they can. This is a political mess. Until we get rid of this in office who STARTED THIS CRAP nothing will change. I’m surprised the veterans aren’t lobbying?!?

Katarina

Back in 2016, MN decided to cut all Medicaid patients in our lovely state down to 90mme. My doctor, in his 30 years of practice has never had a patient OD, never lost a patient due to anything due to opioids. Within 30 days of this, 2 of his patients killed themselves. He told me they cried to him, but had not money to pay for pain meds out of their own pocket. Stupid me did not believe him when my beloved doc said that regular pain patients were next. He was forced to retire, as he refused to just reduce pain meds without cause. Of interest, released in 2018, October, the MN HHS released an awful doc that is WORSE than the CDC’s guidelines, and people here, legacy patients are all being stripped of pain meds NOW, (note, if you are not aware, the CDC added an addendum for physicians in early 2018 that takes back some of the horrible things they put in motion, yet does not go as far to retract the statements in the 2016 guidelines/recommendations- it did not get much press nationally, was pointed at physicians, vs patients). The MN HHS decided that the CDC did not know what they were talking about when the CDC figured what = 90mme/how much of other drugs it took to make 90mme, so, for example, fentanyl patches are now about only about between 1/2 – 2/3 the amount that the CDC says equals 90mme. AND, MN says below 50mme is strongly recommended. No new patients allowed on chronic meds. The AWFUL CDC guidelines live on. The AMA had good advice, but apparently MN ignores them. I am considering how much my life is worth right now, and the lower my meds are cut, the more questions I ask my doctor. He is aligning his beliefs with some crackpot Project Echo group from Canada, who decided that cutting all breakthrough meds first was necessary because we as pain patients get high on them. Boy, you sure can tell who the idiots are who have never been on chronic pain meds before are, and have no pain patients on their board which means they are CLUELESS.

Brad66

“Currently, no data exists to support forced, community-based opioid tapering to drastically low levels without exposing patients to potentially life-threatening harms.” So why is it STILL being allowed?
While the letter published in the National Pain Report was well intended, falling short of absolutely demanding the forced tapering of Legacy Patients be immediately stopped, with the patient’s previous dosages being also immediately reinstated due to numerous, specific potentially life-threatening medical conditions, the letter has minimal affect at best and serves little purpose.
The facts have been publicly documented that there never was any valid medical justification to force taper anyone truly needing opioid pain medications. Chronic pain patient’s incidence of becoming “addicted” are so minimal they’re nothing to even be concerned with. The significant majority of narcotic-related overdoses involve illicit fentanyl, heroin and/or meth, often in combination with alcohol.
Most prescription opioids are written to people over the age of 50, the majority of which happen to be female. The vast majority of “opioid overdoses” involved young people, typically in their 20’s and 30″s, wherein the majority are males. Narcotic-related overdoses continue to increase year-after-year, while the number of legally prescribed opioids has leveled out at a 15-year minimum. e.g., the fewest number of legal opioid prescriptions in the past 15-years. Yet, overdoses associated with “opioids” continue to increase. Obviously, they’re not legally prescribed opioids.

Dear Joyce: That is terrible. It is so fascist I can’t believe it. It treats all pain patients as if all their bodies and disease mechanisms are the same. The dumbing of America has reached a new low.

Yes it is illegal and unconsitiual many people have died , we are voting our Govnor out. They don’t have the medical knowledge to handle this, they took my pills away in one visit. I was a cancer patient.

csheltri

Please tweet President Trump and your senators etc every day! Addresses can be googled. For example “Mr President please help fellow Americans tortured through medically unnecessary opioid tapers!” Or President Trump my medication has been out of stock x times in 6 months. Please bring sanity to opioid hysteria.
Tweets and Facebook comments are much easier than phone calls and letters for the ill and in pain. Please join me in speaking up by any means possible.

S. Dixon

There seems to be a lack of caring throughout the entire medical community. They have all gotten a case of panic, and fear for their jobs when they have families to support. The only way these people will begin to care about us is when they or someone they love has un/undertreated pain. It’s been five years since my pain has been treated correctly. I remember that I could function. Now I spend the greater part of each month in bed. My overall health is declining because of inactivity. With every doctor who retires or simply leaves because of the situation, my treatment has been cut. My medication level is now 6 times less than what I require. Rich said we know who is responsible for this, well I don’t, if I did I would write that person daily explaining my misery.

Terri

I beleive anyone signing anything involving forced tapering should not only lose their position, they should be criminal charged. These people have been warned of the physical and mental damage they are causing patients yet they persist with no medical evidence to show they are improving anything. I can’t wait for the day that a committee convenes to hold each and every one of them responsible!

renee

has anyone raised the issue of equal protection? oregon cant have rules for private insurance or medicare and different rules for the poor.

The powers-that-be talk about overdoses death but they don’t mention is that you can overdose on Tylenol, Advil, aspirin ibuprofen, it will kill you. Funny how they don’t talk about the stuff that you can get over the counter that can cause overdoses. you can overdose on insulin .these are the Alternatives they want us to take for the intractable pain on a constant basis. people who have an ulcer none of these are acceptable can cause internal bleeding. So can having too many steroid shots can cause internal. They don’t mention any of this being cause of death but it happens. You can end up in more pain from using steroids bc it deteriorates the bones. So all their alternatives come with high risk. Let’s not forget spinal cord stimulators how high risk those are. But the opiate are so evil bc you’re supposed to Crave them. Wasn’t that the same thing they had back in the 1950s the marijuana Madness made you crave marijuana but now they’re selling it for recreational use / Medical. Do they think we’re so stupid that we can’t read the Black Box warning that’s on over counter. Steroids have black box warning, the manufacture wants them pulled off market in USA other counties stop using steroids but its a favorite money maker here. Wished i kn sooner.

Jody Hoffman

I was forced to taper off 2 opiate medications with no warnings. I was stable and active on what I was taking. When my doctor retired suddenly I had one script stopped completely & the other cut in half. Over 16 months I lost 30 lbs and 13% lung function. Despite the evidence that the Dr saw every time I went to the clinic she refused to do anything. I eventually got to see a pulmonary doctor &his report to her stopped the problem I have finally been prescribed the correct dosage. She still refuses to think that her actions caused this. Ask your doctor why are you being forced to taper, if you don’t speak up for yourself you are going to be cutoff completely

Nancy

It is inhumane the way that chronic pain patients are being treated in the United States.
Totally inhumane. I am the parent. My son did not ask for this pain. Addicts are treated better than chronic pain patients.

Rich Reifsnyder

I truely believe millions of us Intractable Pain Patients Have had enough when addicts are treated fine and we are tortured and dying.If this goes on much longer some people insane with pain could start an armed uprisings and I wouldn’t want to be the one they look for,we all know who did us wrong!

Joseph Lane

The one thing that stands out about this article is the absence of an alternative to the opioids that the CPP is being forced off of. It is well and good that the process of forced tapering is safe but the word FORCED should be a huge red flag. Imagine the fuss if the government demanded that all diabetics be forced to taper off of Insulin, especially in the absence of a legitimate alternative.

Leslie Meadows

At watching & seeing where all of these forceful parameters occur in the liberal states(democratic politics)appear to be in the majority ! So liberal hacks are telling us no more meds for our diseases,pain & of course not for mental health!? I’m so glad I live where I live # free meds

Lost in pain

I have been on opoids for more than fifteen years. My first ten years I felt supported by my doctors and when the time came to refill my medications I had no problem. All that changed about 5 years ago! The pharmacy that had always filled my medications starting to give me ridiculous reasons why they would no longer fill for me … such as they no longer felt comfortable! I would end up out od medication for days at a time without being able to find anyone willing to fill my medications on a constant basis.
I ended up at ER where I was put on medication that did not help me and was accused of lying. I have rebound quite a few times only to find myself in the same place (in pain time and time again! Now it is forced tapering that threatens my very limited life that I am still fighting for but clearly ready to finally end all the suffering that is being bestowed on me! Now I surely know I am not alone but if that is suppose to help me or make me feel better think again! The light that once shined so bright is but a flicker … I am trying to hold pn but the physical pain I suffer with has a threshold that I have long past. I am now on borrowed time as they reduce my medication by 1\2 over the course of two reductions.
With nothong helping I am now planning! Yes, they are killing me and people like me!

Parker

Cindy, I just read your post. I know how you feel. I think that that stress of your situation is contributing to your increased pain. My PCP who I haven’t shared more than 6 sentences with for 3 months called me last week and told me I was mentally ill. Where that came from I will never know. He used to treat my pain until I went to a pain specialist January 2019. I know that the DEA is after him, but he’s so wacked-out he didn’t even realize that I had stopped getting my pain medication from him. Once he threatened to have men in white coats come into his office and take me away. The only reason I stayed with him was for the pain meds. Needless to say, his call got me so upset, my pain level sky-rocketed. To know that I could be manipulated by his crazy behavior made me realize that I have to try to remain as calm as possible. I know this isn’t easy, because we all know that at the drop of a hat, the pain medication that is just barley helping us maintain, could be taken from us on a whim. Please stay strong and try to find peace. It won’t be easy, but it will be better than leaving your loved one’s grieving if they lose you.

Parker

The big problem with all of this is that only our fellow pain sufferers are reading this. I know you are hurting, you know I’m hurting, but no one other than us is taking any consideration of what’s going on. If they did, conditions would be different. I wouldn’t be surprised if doctors are just entirely wiped off the map and we’ll be going to government agencies to treat and diagnose our problems and then we’ll really be in a jam.

HHS Pain Draft Report—Have You Commented? We have until April to make our comments know to the government regarding this pain report. Please put your efforts and your comments down on paper and let the powers that be know about your conditions and your thoughts as to how the government is going to regulate your pain treatment. The government needs to know. An article appeared recently in NP. Find it make make your voice be heard before the steamrolling crushes your chances for a more normal existence.

One more thing, when we live in a world where Unborn babies can be aborted. even after they’re born & they haven’t taken a breath yet they can be put to death. than why do you think the government would care about a bunch of intractable pain people and most of us live on social security or Medicare or Medicaid. Why do they care about addicts ? Government says saving lives matter (addicts) prevent addiction. They create the laws in who life matters. We need to watch who we vote for. We want government to care about our situation but look at what’s taking place around us that’s allowed. What kind of society do we live in. where addicts take precedence over people intractable pain who didn’t choose to be and especially babies that didn’t have a choice at all. All these life situations matter. The pendulum swings too far in all these situations.

There R 11 American Senators that oversee the Holocaust Museum. They r to promote human dignity & prevent genocide, yet the American Senators turn a blind eye on atrocities forced on intractable pain people that will lead to the American genocide history. Will there be a museum for the American people who was forced to commit suicide due to its own government policies. There is a mass scale of industrial workers who planned & overseen the logistics of laws to force to taper & eliminate prescribing all together. We R numbered / track just like the Jews by the C.S.database. Go to this website & read its depressing but it has so many similar issues that intractable pain people R subject to it’s scary. ww.w BBC.Co.Uk titled why did ordinary people commit atrocities in the Holocaust? Or look under Holocaust w/ this title. read what Christopher Browning the historian says we don’t learn from history ect. By shutting down & raids on P.C that is implementing fear in other Physicians not to prescribe. This is also part of the propaganda & the ads on TV that anyone that uses opiates is an addict. This is the way that government makes people who have a need for conformity makes the rest of everyone fall in line. That’s why you see so many Physicians going lower than the 90 me. Interesting how many Physicians / psychiatrist & other players they used in the Holocaust to eliminate people with disabilities. in the past there were few that stood up for what’s right & now there are few that stand up but it does all count it makes a difference. Thank you to regular people & Physicians.

Death4me

Forced tapering is a big deal everywhere! Why is it that addicts are given so much attention but those of us that need these medications to survive are being thrown under the bus?
The medical community has given up on us because they too are in a fight. Their fight is to keep their medical licence. These doctors, including pain management doctors have seen their profession prosecuted in what is now a witch hunt!
They know that there is no longer any way that they can help us without losing their licence or worse!

We know how many people are dying from opoids every year … many of which are not coming from doctors but clandestine labs in China.
Since they started cracking down on doctors and making pain patients suffer; the number of addicts that have continued to die every year has gone up!

Why is it that no one is keeping track of the number of pain patients that are taking their lives because the pain that we are being forced to endure is just far more than we are able to deal with?
This is genocide! The government knows this is happening but their is no one willing to help us!

Tears are streaming down my face and sounds of agony comes from deep within me.
All the while I remember reading that there will be no forced tapering!

They have lied to us and continue to lie to us until the pain is so great that any kind of death is welcomed! Yes, we are killing ourselves to end our never ending pain which for most of us was fairly well controled before they started brainwashing people; tellling them than opoids do not help pain! Those of us like me who have used opoids responsibly for a very long time; for me, more than 15 years without any problems knows the lies as well as the extreme pain that I am in with the knowledge that medication is available that I know works for me but it has become unavailable to me and those like me!

Our government are killing us!

Issadora Saeteng

It’s “simply” a Nazi era way of disability, any abnormality and a extra side of ethnic, social status if applied, form of genocide, cleansing of people who are seen as burden or other…..

It’s depraved and outsiders don’t care because they don’t recognize the bigger picture or perhaps some do but agree

Thought it was interesting that a forced opioid taper for Medi Caid patients is being considered….. Of course! Saves gov money, who cares about the poor anyways and gee, how many minorities are more likely to have medi-caid

Not saying this isn’t happening to people of various social privledges but many know , illusrated in research about racial bias health care inequality! I’ve experienced it in my own life and concretely.

As Michael Jackson sings in his piece . all I really gotta say is, THEY DON’T REALLY CARE ABOUT US…..

Another suicide…. Well now, less burden of care for non contributing in society…

Such a depressing theory but I feel it’s likely factual….

Meg Taylor

A study with a large number of cases needs to be completed by a reputable medical doctor. The study needs to separate the drug addicts from the pain patients and see which group is overdosing. The study also needs to track the drugs bought by the addicts after it comes across the Southern border and the pain medication used by pain patients after it is prescribed by medical doctors. I already know what the outcome will be.

Dick fort

I’ve been on pain medication for a better part of my life I’m going on 14-15 yrs I’ve been tapered down more then half my.meds that now unfortunately have been taped down so much they don’t work so I’m now bed ridden I can no longer work out I can no longer work I can no longer do Tuesday basic life things that makes life enjoyable and I’m young I’ll be 31 I believe March 28 my life is effectively over at 31 cause I have had my.meds cut so much and I was at a dose that I was fine and able to manage and not need an increase, I probably will soon hopefully not too soon but eventually ending my.life cause of one the pain and two not being able to get the help and third being treated like a junkie and I don’t wanna ever have to report to street drugs good only knows what’s in those so what am I forced to do. This is what there making u do for someone that has serious pain they want u to wake up every single.day at 4-5 in the morning and bring a chair or stand in line to get a cup of methadone to somewhat control ur pain and also not to be sick and withdrawal it’s a joke they LL allow these clinic to write up to 180-190 mgs of methadone which is five to six time the morpt equivalent maybe even higher I don’t get it so why are they allowed to but a doc a pain doc that’s gone to school forever not be able to judge case by case what a person needs for there pain condition the same goes for a regular MD there smart enfo to make a judgement baised on a whole case file of how long a patient has been on to his size to his metabolism all these things need to be take into account when prescribing to a paitent it’s not rocket scientist plus swab and urine analysis along with a pmp run test it’s not hard this equivalent thing is absolutely bullshit and another way to control us and another way to spike more deaths and push people to harder street drugs u watch

How can this not be considered malpractice

Marilyn Pittman

“Rapid forced tapering can destabilize these patients, precipitating severe opioid withdrawal accompanied by worsening pain and profound loss of function. To escape the resultant suffering, some patients may seek relief from illicit (and inherently more dangerous) sources of opioids, whereas others may become acutely suicidal. Regardless of one’s view on the advisability of high-dose opioid therapy, every thoughtful cliniciare recognizes rapid tapering as a genuine threat to a large number of patients who are often medically complex and vulnerable. Indeed, even slower tapers should include realistic, patient-centered goals that are achievable and account for individual patient factors.”
THIS STATEMENT COVERS WHAT I AM SEEING IN MY FRIENDS. THE FDA ARE NOT LISTENING NOR DO THEY SEEM TO BE HUMANE. WHEN IS THIS PRACTICE GOING TO STOP? I HAVE ALWAYS SAID THIS PRACTICE (FDA) WOULD WORSEN INTO SOMETHING MORE DANGEROUS, I.E. ILLICIT SOURCES. KNOWING THIS, WHAT ELSE IS A PERSON WITH CHRONIC PAIN TO DO? SO MUCH FOR THE GREAT AMERICAN WAY!

Absolm Flazed

4 yrs at 75mg morphine IR/ER daily, no problems. Foot,knees,pancreas. Tramadol, tylenol, Motrin nasty side effects. Knee surgery May. After perioper consult I’m lined up for a series of EXPERIMENTS to control pain without opioids. Been there done that nearly killed me with pain. Morphine works with no side effects but might make A.M.A. look bad in these times of Fentanyl panic. Baby out with bathwater, HOPE MY AGONY IS WORTH YOUR REPUTATION. 1st rule, ” do no harm “, going with the baby. Very sorry for mostly fentanyl illegal abuse deaths. Let’s add some more victims.

It’s becoming inhumane as lawmakers dictate the treatment my pain doctor can Rx. Suffering from fibromyalgia, trigeminal neuralgia and Leishmanasis, a parasitic infection and consider to be among the top ten neglected tropical diseases by the World Health Organization. This parasitic Disease is responsible for my chronic anemia, a large open, non-healing would on my leg, as well as, frequent Staph & Streptococcus often with necrosis, and breathing difficulties.
I’m currently hospitalized for the next several weeks treating Osteomyelitis, a bone infection in my leg which puts my limb & life at risk.
Being chronically ill is difficult – beyond imagination. Overall, I function, at best 25% of normal.
Pain management is critical to my ability to function and my quality of life. Even with opioid medication, it takes incredible effort to do relatively normal tasks, such as showering, walking out front to pick up newspaper, or to make something to eat.
This past year, my condition has continued to decline, yet my opioid medications have been cut by 30%. This cut was not based on my doctor’s recommendation, rather by lawmakers. Yes, I admit that I am opioid dependent. I take my medication as prescribed in an attempt to stay ahead of the pain so as to have some normalcy in life. I, however, am not an addict. And, I certainly wouldn’t even consider selling my medication.
I challenge lawmakers and anyone else who think that I should be forced to wean off my opioids to walk in my shoes for a day.
I beg for their empathy and sense of compassion when considering any further reduction or restriction to the opioids my doctor can prescribe to patients suffering from debilitating and chronic pain syndromes. Basic humanity calls for unnecessary suffering to be eased. Any further restrictions essentially is cruel & unusual punishment.
It’s my Constitutional right to life, liberty and the pursuit of happiness.

William

There should be no tapering of patients that have been on medicines for years. It gives us a decent life not perfect but livable. Most of us are already under medicated now. Stop these cruel policies before more people die.

nana

Oregon has a death with dignity law.

They are very hypocritical to force “life without Dignity.”

As long as consequences are described again and again and patient is educated over and over and legal papers are signed by the patient..” Life With Dignity ” should be an option available too.

Anything else is just a money and political game.

It is obviously will not stop at 90 mme. To make plain I NEED 168. BELOW THAT I HAVE HADE IT !

I could not find a way to sign. I am in. I will go as far as I can but that will be a very short while.

Ms Melody Oldham

my doctor is focused on nothing but getting me off my pain pills. my pain is something she can’t even imagine and no matter what symptoms I am asking her about, everything is, according to her, because of my pain pills – this sucks –

cindy

I posted yesterday that 2 days ago I was thinking about suicide due to my forced taper — the last few days I’ve had an incredible pain spike for no apparent reason, and I felt I couldnt’ take it any more, and while I still had pills left, was afraid to use them out of need to conserve them. I finally realized that until I’m out of pills, I should allow myself to take what I need, at least when the pain feels like I had my surgery yesterday instead of 10 years ago.

This after 10 years of not a very high dose anyway compared to many other chronic pain patients. In fact, I suspect that if my prior dose was higher, I would have had a real life these last 10 years instead of being mostly housebound, which has resulted in my SO travelling alone etc and our relationship down to almost nothing.

I keep reading about people w/chronic pain who work, travel, etc, and all I do is go to medical appts and very basic housekeeping. So many days I can’t even shower. Right now my kitchen smells from dirty dishes that have been there for days. I ran the dishwasher a week ago and haven’t been able to empty it, and so new dishes are in the sink and gross.

I don’t want to die. Even with my very limited life, I have pleasures. I make sure to watch TV shows that make me laugh at least once a day.Plus I watch other shows and movies that I really like. I read if I”m up to it. I have a nice view. I have good disability insurance to be very thankful for. I have a few friends in spite of my limits. I’ve been too sick even to read the national and local newspapers this past week; super bad, as for me, that’s a huge priority.

I’ve been so sick for the last few weeks that I haven’t yet been able to write my comment to the National Task Force but I hope to before the deadline; there is really nothing more important I can do if I’m up to it.

I just woke up and am waiting to see what happens today. So far, it’s pretty bad but not horrific like it’s been.

Forced tapering is inhumane, Period.

Carl Dunn

As someone who needed pain medication to be able to work, and be functional, due to scoliosis and lower back pain, I used the same set amount of drugs for thirty years. Fortunately for me, this ended on the cusp of the government crackdown on all opiate users for whatever reason. I forced myself to taper down after I retired and didn’t need so much of the meds as I wasn’t working 40 to 60 hours a week anymore. I still suffer some pain, but take tramadol a total of 100 mgs a day, morn and night, 50 mg each time. I did not like being addicted or dependent on a drug to live, but thank the good Lord above it was available. I could still be on a daily dose of opiates, but really, in effect I still am, but this is the best I can do. As someone who has been there/done that, tapering is the only safe way to reduce the amount. However that may be, sometimes it is just impossible to go any lower than, for instance, than what I use now. I weaned off oxycontin first, then methadone, from a clinic, then suboxone, but let me tell you this, methadone and suboxone are the absolute worst to taper off from! If you use for a year, it may take you two or three years to reduce safely and effectively. The same with methadone! Every month or two (or three), you cut it by half, sometimes maybe a quarter, whatever works as everyone is different. And you will need a year or two to recover to a normal metabolism. For the time you use, it is the same time to recover, or longer. So don’t use suboxone or methadone for longer than a few weeks! At least opiates may take a month to wean or suffer withdrawal symptoms. These facts I can attest to as truth, and if anyone disagrees, they have not been there and done that!

This is disheartening information to say the very least. It hurts me to hear about the status of Vi and Fred. Unfortunately there are too many Vi’s and Fred’s that this is happening to. We’ve got so many that are wanting to change the world yet other than through prayer with faith to God above I don’t know just how we are. In saying that I think prayer is an excellent start and yes that’s my opinion only! I’ve been doing so from the get-go, believe me. As I sit here this morning debating on whether to comment or not, I thought what’s there left to say? After a few moments of prayer I thought you know what? I’ve written everyone with the exception of the president. For what it’s worth, I went to http://www.gov.com and wrote him a letter. I know what you’re thinking, same thing I did; he’s never going to see it. Well that’s okay because I’ve decided I’m going to do this every single day. It took all of 15 minutes to do so. In today’s letter I implored him to read the National Pain Report, the stories and the comments. I told him that the chronic pain community was dying. I told him about the many suicides of chronic pain patients as well as the suicides of our veterans who fought so very hard to make this country what it is today. All because we are losing the only thing that kept us productive in living, our life saving opioid medication. The doctor’s words from yesterday’s story still haunt me today. He’s so compassionately concerned about the patients that physicians’ have fought so hard to keep alive, yet they’re very welfare concerns him deeply. All we can do is keep on praying,(with faith, and yes I realize that’s hard to do sometimes) hoping, writing and fighting. May God continue to bless each and every single one of you. Hold on my brothers and my sisters, please try to anyway. With lots of love and prayers for all of you.💞

Rosalind Rivera

Once again I must speak up concerning the atrocities that are coming about as a direct result of pain patients being denied the proper amount of pain medication both prescribed and used by people in drastic pain situations. So pain medication has been drastically cut to this who through viable proof such as x-rays, MRIs and such is clearly evident. Now what is being done as a direct result of this procedure. To name a few we have patients seeking pain meds ifrom drug dealers on the streets, theft of pain meds, a sharp and growing number of suicides due to the fact that patients in chronic pain simply cannot cope anymore and the list is endless. When will realistic laws be enacted to protect people in pain? What drastic result is there going to occur for much needed revision an literally the extermination of the powers that be who have control of such matters. Allow the Pain Specialists to have a major voice in this issue, for in the end, who knows a pain patients needs better than the medical professional who has been treating these patients in a long term situation.

EVERY agency and government elected persons NEED TO BE DRUG TESTED! It is NOT possible that these people THEMSELVES or THEIR loved ones and family members they care about are GOING WITHOUT PAIN MEDICATION.

Shelfon

What to do this is genocide and they won’t listen. I am one of the 18 million Americans and will be without any doubt suicidal. Please those on these medication need them to help withstand the extreme pain that healthy people can’t understand but please I beg you to know there is pain on a level that these opiods help some with and are our last option to have pain reduction atleast enough to be able to have functionality. These medication are life saving for millions

Bones

Indeed forced tapering below 90 mme per day, even on patients who were at one point at 500+ mme and now are bedridden with
or without the break though pain medication “30mme” offered only even after the doctor was told it wasn’t effective could we try anything else. Had no choice but to chose to not accept what wasn’t helping and go home for another six months and be bedridden. On the way out in front of two witnesses the doctor said “discrimination is still legal in 31 states” indeed it is doc!

Marjorie Booker

I have come to the conclusion that unless a politician (i.e. the elected officials and their appointees) have ever experienced significant pain they can’t relate to our needs. My husband who has experienced much pain admitted he really can’t relate to my nerve pain. Since these people in charge don’t dare admit that they might not understand they will stand with the people that contribute money.
My heart goes out to those that have lost due to drug overdose but they too need to admit to themselves if it was not fentanyl or heroin it would have been something else.
Society (gov,media,people,medical ) need to stop the labelling. We as a nation need to figure out how to provide better help(mental health)for those that need it instead of them turning to the drugs.
What happen to the mental health initiative from years ago? Why do we need governments to mandate insurance cover rehabilitation for drugs and alcohol?
Something is very twisted in society. We used take care of each other in our community. Most don’t know their neighbors name. We have lost the ability to care for others. I am 62 and remember a time when I was younger if you saw someone in need you stopped and helped.I still do that today.
I couldn’t find a young person to pay to carry something up a set of stairs. This alone says a lot. Maybe it is only in the bigger cities a problem but I believe if the fundamentals were brought back we might not be in this mess.

Maureen M.

To all of the Professionals who signed this and are/have worked very hard on our behalf… I Thank You from the bottom of my heart. I wish you the best outcome. We need your continued support. Our sufferings are real and our needs for proper treatment are dire. Keep strong in your beliefs. Maureen M.

Gary Raymond

This whole witch hunt must be challenged in Federal Courts by the States for its lack of reason and inconsistencies of application. For example: Cannabis is classified on Schedule 1. Most opioids are on Schedule 2. Therefore, nobody can legally consume cannabis within the United States and opioids have therapeutic value. The sadomasochistic are enforcing the opioid guidelines as though they are Constitutional Law while States are legalizing pot. It appears to me that cocaine use is becoming acceptable and the mentally ill are running the Health and Human Services, including the highly ineffective Center for Disease Control and Prevention. The only thing that makes sense to me is that money is involved. Doctors have been paid by Big Pharma to promote their ineffective medications and now they are being paid by Uncle Sam to withhold effective opioids. I know lawyers are mercenaries but I never thought doctors would succumb to such low ethics. Everyone knows how unstable pharmacists are. How does persecuting the chronically ill thwart the black market or mitigate recreational use of any chemical by the healthy?

Judy Klingenhofer

I was a legacy opioid patient. Due to various health problems and chronic disease, Crohn’s Disease, my treatment escalated to the point where my pain management doctor, my primary physician, felt uncomfortable writing my prescriptions and I was asked to seek out a pain management specialist to help me taper down or get off the medications. It took me over a year to find a doctor to help me. I was at the point where I just wanted to end it all. Finally a friend of my family heard about my problem and was kind enough to “take me on” as a patient. I was put-through detox, in a controlled atmosphere using medications to help with the withdrawal. I don’t think many people understand how hard it is to get help, and the patients being forced without any medical oversite are not going to be able to do it on their own. We need more programs in place before they should even think of forcing this inhumane treatment. I was one of the lucky ones, but I almost wasn’t, I was days away from taking my own life. I’m now worried for my future, as I have a disease that will probably require many more surgeries in my lifetime, one for sure in the next few months. What is going to happen to me? What can I expect for post surgical pain, while dealing with my ongoing chronic pain? This atmosphere is so scary for us, the forgotten people, people with lifetime disease. We did not ask for it, we did not choose to be born this way. What are we to do?

Thank you for reposting the letter. I plan on enclosing it in my response to Sen. Markey as his office will be looking into why I, a legacy patient, was forcibly tapered due to MassHealth (Medicaid) refusing to pay for the dosage of medicine that I required. The refusal to pay went on despite the immediate increase in heart rate (I am now constantly tachycardic) due to increased pain, the severity of the increase in pain, and my now increasing blood pressure.

One would think that being on the same medications at the same dosages for over a decade would have meant something. One would think a history of DVTs would have stopped this taper. One would think that adding another opiate medication back into the mix simply to keep my heart rate down to 110-120 bpm would have opened someone’s eyes. Finally, and thankfully, after a year’s time someone has heard my call. I hope to have a happier end to the story now, and will keep you updated.

Thanks for all you do.

Audrey Lynn
White Flag Project

this has to stop !!! in history there was a group that was getting rid of the crippled and lame,,, History is now repeating itself in the years of 20teens,,,,,, Is America really going to get rid of its pain patients, all 18 million through genocide ? And the people that can stop this madness they are going to step aside and watch what they’ve caused….. GOD help US.

Alan thurman

It should be a choice by the patient and that’s it. It’s the patient s life. If the doctor explains the risk and the patient understands the risk. The government has no business in
doctors office. This is torture. This is all about money. Next the government will test diabetics for twinkies in their system, if they find a Twinkie they will stop your Diabetes medication. Is it all pain patients whi are getting their medication, taken away or are we just singling g out Medicaid patients. You know u might want to focus on all of the fraud associated with pain pills and leave tge real life people alone. Do you think that once people are off pain killers they will do what’? I can tell first I sit in a chair all day and for two years I am more than miserable! I do t see that changing!!!!! It will only change when those in politics get in that car wreck that damages their spine and they have pain daily and they can’t get any relief. That’s the way I see it!