What I Would Have Told Oregon Officials About Its Forced Opioid Taper Idea

By Kelly Howard.

Editor’s Note—When Oregon’s Chronic Pain Task Force met in September, there wasn’t much opportunity for the public to speak. Kelly Howard was asked to submit it in writing, which she has. It is worth sharing.

“My name is Kelly Howard. I have been a chronic pain patient since the late 70s. My doctor first suggested I apply for disability in1989; I worked 22 more years because of responsibly used, prescribed pain medication. Many of those years I worked as a medical research specialist, so I’m here to discuss the bibliography of this task force.

Despite your repeated use of the word “evidence” you have less than no interest in it. You have no evidential basis for this extremist proposal. There is considerable medical evidence that these pain medications are efficacious in the treatment of complex chronic pain conditions –far more good evidence than the opposite.

Kelly Howard

I expected to see cherry-picked studies which confirmed your extremist proposal. I found no such thing: your own studies support the use and efficacy of opioids. I refer to the Scottish Guidelines for Chronic pain, the NICE guidelines for neuropathic pain, and the American Academy of Pain “minimum insurance benefits”. They all have 2 conclusions: 1. Opioids are safe & effective & have a role in the treatment of chronic pain.  2 “alternative treatments” may provide some benefits for some patients, so they might as well be covered. NONE of these say that ALL pain meds should be banned; all say opioids are safe & efficacious and are a legitimate part of pain management.

I was sure I’d see the remarkably poor Krebs study. If you read this study, as opposed to mainstream media’s absurd headlines, you’d know that it is so flawed that it’s an utter travesty. Some of the flaws: the study population does not reflect chronic pain patient reality on multiple ways; it looked at 2 conditions that are not normally treated with opioids and may improve over time. A major problem is that 11% the “non-opioid” group took Tramadol –a synthetic opioid– when OTC medicines proved insufficient. As for the opioid group, about 120 people were on those “heroin pills” for a year, with no abuse, addiction, dose escalation, overdose, or deaths. The only valid conclusion that can be drawn is that opioids can be used safely even when given in a flawed, biased study done by people out to prove that they can’t be used safely.  Interestingly, the author of the study, Erin Krebs (clearly no fan of opioids), has come out against the CDC “guidelines” of tapering patients to 90 MEDD –so one can only conclude that she would not approve at all forced tapers to zero.

A review paper, Chou et al (AIM, 2015) lists several low-quality studies that attempt to correlate opioid use with numerous bad outcomes, including impotence and fractures. Leaving aside the fact that correlation does not equal causation (which is repeatedly ignored these days), the authors conclude that long-term opioid use results in higher usage of ED medication…yet it was not known whether ED med usage preceded the use of opioids –one may conclude with equal (in)validity that ED meds cause opioid usage! A study looking at fractures showed a very minor increase, but it was not statistically significant. Even though absolutely no conclusion whatsoever could be legitimately drawn from these two studies, the authors state unequivocally in the Discussion that the harms from opioid use are “clear” and include impotence and fractures! There were other problems with other studies in the review, but space limitations prevent further detail.

A review was done in direct response to this Chou travesty by Meske et al (J Pain Research, 2108). These authors arrived at the conclusion that “Opioids are efficacious in the treatment of chronic non-cancer pain for up to 3 months in randomized controlled trials.”

The paucity of studies looking at time periods longer than 3 months is due to the fact that study designers consider it too cruel to withhold pain medications from pain patients for longer than 3 months; this panel clearly has no compunction about the cruelty inherent in withholding pain medications from pain patients permanently.

The other studies in the list focus on alternative therapies. With varying degrees of quality of evidence (mostly low to very low), they indicate that these may help some people sometimes, for a little while. Many of us have already triedmany of them and have gone broke doing so.

But where the wheels completely fall off this bus is where you people insist that it’s one-way proposition: we may access alternate therapies, but all opioids must be banned. This is not backed by scientific or medical evidence, or even CDC guidelines. There is no moral, ethical, or legal validation for this insanity.

This state has already instituted an involuntary experiment upon its back-pain patients by forcing them off opioids. It has no idea of the impact of this forced treatment change. Now you want to expand this unethical, unsupported experiment onto thousands of other unfortunate citizens. There is no evidential basis for this extremist proposal. There is considerable medical evidence that these pain medications are efficacious in the treatment of complex chronic pain conditions –far more good evidence than the opposite. The recently released VA study shows that forcibly removing pain medications from patients greatly increases the suicide rate.

Despite repeated insistence –without convincing evidence– that Oregon is the only state in the entire Union where illegal drugs aren’t the problem, this state has no magical illegal drug-proof force field surrounding it. Ripping medication away from people who need them for functionality and quality of life is not going to cure any opioid problem in the state.”

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Authored by: Kelly Howard

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Prof Magyar

I encourage anyone who needs medication that is refused for no reason, should look into the dark web. A law that is unethical, not logical, and assaults others no longer is a law that requires adherence. Therefore, utilizing the dark web to obtain what you have a right to based on diagnosed medical condition(s) is not only ethical but the right choice. Be vigilant though, there are a obviously more unethical dealings but if you do your homework and work together you will obtain what is legally needed.

Bruce

It all makes sense, but we have no leverage. Our efforts are all predicated on appealing to the conscience of the powers that be. Of course we’re right, of course they know we’re not the problem. We are dealing with a sick operating system. It’s the UN Agenda 21–for the 21st century. It’s designed to eventually kill 90% of the population because artificial intelligence is now sophisticated enough to eliminate a majority of jobs. They don’t need us anymore and want us gone. I could go into the myriad ways they’re trying to accomplish this, but all we care about is this method to kill off chronic pain patients. And that’s exactly what it’s doing. So you see, the operation is a success, and there is no need to change anything. The people that run this agenda do not care about us and never will. So, do we give up? No, but we have to LEVERAGE the people responsible for this. We are not going to be able to do it through logic, or facts – they have proven that these don’t count, and that we can’t stop them from taking our meds away. I had mine reduced a few months ago, and I asked for a reason as to why she did it, and she just said that I have enough medication even with the reduction. No tests, no data, no changes in situation, no problems with the medication. Nothing. It’s either her license, or my life. Guess which wins every time? We mean nothing. We are nothing. We don’t pay taxes, or participate in the community as such. Until we leverage these devil worshippers making and implementing these laws, we have no hope. Trump just wants people off their ass and back to work. Now that he’s accomplished that, he needs to go after the sadistic sociopaths trying to kill us off. Send your inquiries to Trump, or his inner circle of advisors. The congress and senate are bought and paid for, blackmailed. We cannot rely on them. Even if one occasionally shows a conscience, it’s going to take dozens of them to effect any change. This legislation passed virtually unanimously.

Michael swift

Kelly Howard…THANK YOU. For such a informative and truthful comment. I can further debunk the false claim by the OHA that “illegal drugs aren’t a problem in Oregon, “…on the contrary.. Illegal drugs
,are a HUGE problem here in Oregon where I live. ..which is a small town I will not name for safety reasons, located on Hwy. 97′ which is nicknamed “the METH highway”. Also coke, crack, fentanyl and heroin. I know from my experience in law enforcement, this for a FACT. As a C.P.P. myself, I am outraged by the OHAs continued lies, and would like to ask how many of them on their committee drink a glass of wine after work so I can LABEL them ALCOHOLICs. What these hollow – heads just don’t get is that COPs will not suffer if their pain meds are wiped. They will go to alternative means ..and this will fuel the illegal drug market like jackpot on a million dollar Vegas slot machine. What we oregon cpp s need to do is form a P.A.C. fund it with our own donations only by means of What each member feels they can comfortably donate. Then hire an attorney and sue the state for their violations of under qualified board members for violating Dr. Patient confidentiality as well as the UN charter for ethically humane treatment for the suffering. If the State of Oregon is ordered to pay hefty restitution to families of suicide victims and those who suffered needlessly, then- I guarantee they will finally listen to us !

Caregiver 24/7/365

To the promulgators of forced opioid tapering for Chronic Pain Sufferers:

I will spare you the 10-year medical odyssey, and just relate that my main capacity has been caring for, physically and emotionally, my 79 year old wife — a PhD in the physical sciences, former genetics researcher and professor who wants to “have a life” again. She’s not hoping for a life like yours if you are able to do “normal” things routinely; just one that enables being up and around (albeit painfully and haltingly) on marginally good days when opioids and other meds take some of the edge off her pain for a couple of times two or three hours per day. That’s all we can see as her future at this stage of life.

No need to relate all the things we’ve tried via a world-class neurologist specializing in CRPS, or at Mayo Clinic, or by a pain management doctor who refuses to give up on her suffering. We have been down all those roads.

Two points:

(1) Read and understand Kelly Howard’s commentary above. She is so very right. Though I don’t know your backgrounds, I would bet anything she is better equipped by knowledge and experience to serve in your capacity on this topic.

(2) Get this idea into your heads: the removal of opioids from people like my wife has a predictable outcome. Namely, you will see an increase in suicides. And I predict the plan you propose will have virtually no impact on “abuse” of drugs. Those who rely on partial relief from unbearable pain by using opioids under the guidance of capable doctors have NOTHING (ZERO) in common with the abusing population. In 10+years of being in the middle of this storm, I have known exactly one person who went astray and that was because the public health doctor she could afford to see was irresponsible and undereducated about opioid use, and should have been barred from practicing.

Please do not be remembered as ones who contributed to a crisis of suicide among older Americans in unbearable pain.

kelly

Hi folks, I want to extend my deepest gratitude for your wonderful words & encouragement! They really provide a bright spot in an otherwise rather gloomy time (& I’m not just talking about Oregon weather).

Please, Suzanne, Cindy, everyone feel free to share, print, send it along, pass it around, post it on your Fb page & blog….in other words, send it all over the place! We need to inject some actual facts into the national debate, as well as spread it around how little regard these (& the other anti-opioid zealots) have for facts & evidence. I handed copies to my pharmacist & several folks at my doc’s office; even a lot of medical professionals here in Oregon aren’t aware of the Task Farce’s sleazy tactics & nefarious plot.

Terry, your idea of a one-pager is a good one; one of the Oregon people put together something like that (tho a bit longer than 1 page), I’ll dig it up & see if I can’t pare it down. It may take a few days, I’m barely able to look at the screen right now b/c of trying to get over a migraine (part of the intrinsic problem of trying to get together a population with serious health problems…we aren’t always up & running).

F.S.T.

I need Kelly in our corner in Tennessee! I’m currently at 80 mmeqs which is clearly not enough. The crazy thing is, my doctors agree wholeheartedly but feel their hands are tied!

Preach Kelly!!! Love what you have written! Awesome .

Lynda Hillebrenner

Please do not misunderstand me. I truly believe there is a time and place for every patient to be heard. Your stories of how chronic pain has affected your life are important! But there is a time and place for those to be heard, and right now I believe we need strong facts presented.

Lynda Hillebrenner

Kelly, you have accomplished the first step in getting the medical community, congressman, (both state and national) aware of faulty evidence that there is an opioid crisis in our country, which involves chronic pain patients. I’m a firm believer that most patients on opioids are on them bc everything else failed or didn’t provide enough help with the disabling pain they face every day. And that they are dependent on these medications to function & have a decent quality of life. I know I’m in that category. I commend you for the job you did so well. I believe that with evidence-based research we can keep our physicians, nurse practitioners, physician assistants & pharmacists or anyone capable of writing prescriptions for chronic pain patients aware of the actual validity of what they are being told. I do believe that they are being harassed and unfortunately, some have lost their licenses and practices, and even more unfortunate, we have lost many chronic pain patients due to suicide. I agree with Terry that a one page easy to read and understand compilation of statistics that support our stance that opioid therapy is effective and indicated in the treatment of complex chronic pain patients. I believe this one page of information needs to be sent to medical associations, research institutions & the public as well, through the media.

I hope that everyone who is following this will begin to do a search for articles that our evidence-based and forward them to Terry to assimilate into a one page document. If you are not familiar with evidence-based research, please Google it. It is imperative that we state the facts and the statistics that support those facts. Otherwise no one will listen to us. I also believe that with your article and hopefully with Terry’s synopsis of related statistics we can inundate the media with this information as well, & hopefully begin to change the whole atmosphere surrounding cpps. We need to be heard!

kelly

Red;
Thanks!! And I’m annoyed but not even a little surprised to see they’re cutting back the public comment period in December. Biiiig surprise.
Patrick Starnes got in to say a few words with Kate Brown on our side. I don’t have a lot of hope that she’ll listen, but he sure has tried for us. Maybe he can run again next time, have a better chance.

ElizabethR

It is very helpful when those with recognized professional credentials–as well as personal experience–join the discussion. Often, chronic pain patients can provide “only” anecdotal, first-person evidence because their occupational fields are/were not related to medicine or research and thus their input is simply dismissed or, worse, demeaned.

I hope, probably with undue optimism, to see that change as more patients are encouraged to come forward. We need to hear from more medical/science/research professionals as well as more patients–patients who can report responsible use of prescribed medication that has enabled them to live productive, functional, quality lives despite chronic pain.

Thank you, Kelly Howard.

Cindy Deim

Kelly Howard, I’m wondering if I can use the article you wrote to send to my representatives?

Jill

Well researched, very well written report on the fallacy of Oregon’s basis for denying medicine to those in pain. Thank you for doing this work on behalf of the disabled, bedridden and housebound who only want the ability to function with some degree of normalcy. Your effort is so appreciated. Thank you.

Suzanne Clarke

EXCELLENT write up Kelly. Although unfortunate that they did not let you speak to the topic and then to find out that they have made even less time available the next time is just pathetic. Clearly, these folks are not interested in the actual impacts to the PAIN PATIENTS themselves, otherwise there would be More NOT Less time provided for the actual people being impacted by THEIR decisions. Decisions that seem to be based on flawed or skewed data. These people seem to revel in the power to take medication away, and if that is not the case then they need to explain why animals are treated better than they are treating LEGALLY prescribed MEDICINE for Pain Patients as are the addicts using ILLEGAL medications which are often laced with other things including Fentanyl !!! Those folks are being treated as addiction patients while we are being treated as the ones that have done something wrong by using the medicine that has been legally provided to us and using it as prescribed. Pulling these medicines away from us will only lead to either suicide directly or adding another statistic to the list of addicts using the illegal street drugs, because the pain still exists after you take our prescription pain meds away!!!
Kelly, do you mind if I reference your write up in my fight on the Canadian side of this Opiod issue?

Marji Booker

Kelly that was so well written and to the point with real evidence based studies. Thank you. I suffered a broken back and have had 4 surgeries in less than 3 years. I have reduced myself on my pain meds as far as I can go and still live a work life. If I am reduce any more than I am now, measly 40mg percocet in 24 hours I believe I will not be able to work. Please don’t give up on this fight. Please, please let us patients know what we can do. I have already written tons of letters and emails but sadly have received no response. Not even a form letter.

I am so appreciative for everyone that is standing up for the fight for pain patients.

Nancy Wilson

EXCELLENT! EXCELLENT!

Susan L

Beautifully written and very well-stated. This is an issue that strikes near and dear to my own heart.

June

Kelly Howard, congratulations on a precise, evidence based article. I have not seen an article so well written. I truly hope that your article will be copied & sent on social media & to govenors & senators of every state. That at some point someone with intelligence will realize what you say in your article is the real truth. Thank you greatly
June

Tamera Stewart

Kelly, this is incredible! It is so well written and so clear, I would imagine even a group of alternative practitioners could read and understand this plainly.
Every policy maker top to bottom in at least Oregon needs this information now…
It really is great!

Holly

AMEN!!!!!

Julia Heath

Very well written! Thank you for taking the time to dig through and take apart the studies on which Oregon authorities were basing their outlandish notion of blaming pain medications for opioid overdose & death. I often think to myself, Is there really no one in a position of authority who uses pain medication, who can stand up for us in an influential way? But then I remember that many of us are too broken and fragile to be able to work intense jobs of authority. So we must continue to use our voices in every avenue possible, and take every opportunity our bodies will allow to get our message out there, loud and clear. Don’t be afraid! Many of us (myself included) have jumped in, having no experience to lean on, to speak at committee meetings, with the media, with members of congress, with politicians looking to become elected, etc. The only qualification required is your life experiences in chronic pain and taking pain medications. If you’d like to find another patient in your area with whom to join forces, join your state’s C-50 Advocacy group and your state’s Don’t Punish Pain Rally group on Facebook. YOU ARE NOT ALONE!

Mary

Just read through your testimony and I agree with so much you are stating.
The CDC study is wrong because it combined criminal illicit use with legitimate patients’ Rx care.

I am considering getting dual citizenship and departing the US do that I will not be harmed. The nervous system is physiological, not mental. My injuries are severe. I have been harm3e by medical neglect in hospital, all of this wrongful neglect of injured patients by a Nanny State.

Oh, to be pregnant again with my natural progesterone. My body’s progesterone kept me pain free in 1984 before my 2nd youngster was born (no anesthesia).

Why is our government harming population of legit intractable pain patients? Makes no sense!

Terry

So this is a follow-up to my previous post. I had an idea that may help our dreadful situation. If someone could put together a detailed, truthful set of statistics, with the real numbers, a cohesive set of statistics with references to studies from legitimate authors and experts, it would have to be a “one pager” so whomever reads the studies would have the REAL facts, figures and statistics in a susinct, easy-to-read report. After all we don’t want to use up any of their precious time. So once the “one pager” is completed, we could put a link online with a short introduction and plenty of references on the page as well. Then EVERYONE could send the link to ALL of their congressman and senators as many times as it takes to finally get their attention. It would have to be as succinct as possible to hold their attention. Maybe then out of the 435 congressman and the 52 senators in the United States somebody will do the right thing and take on this important issue and make a decision to be our champion. I think only an avalanche of emails to our government officials with the link to the “one pager”, is our best chance to find our champion who will speak on our behalf. Working together, finding real studies, sharing information with each other, having a point man to put it all together, will give us a chance for normal lives once again. I personally volunteer to put the document together, if others could send me links, information, studies and statistics, with references to all of it. I will gladly put it together so we could send it to every one of our officials. My email is terry.longtin@gmail.com. Send me any and all legitimate information and I will put it together with a link. I would love your feedback. Thank you.

Terry

Oh my God!!! You have expressed exactly what I believe to be true! Why are we (chronic pain patients), being summarily abused and tortured, our lives ruined, suicide rates for pain patients on the rise. Has ANYBODY, who really wants the truth about legal, legitimate opioid prescriptions, taken responsibly by many hundreds of thousands of chronic pain patients, for years and years. I think the government just really doesn’t want to deal with any of it, so they put out their false, inaccurate, deceitful reports so the so called problem just goes away, and they can go on their merry way. There ARE real studies showing that heroin and fentanyl are responsible for 98% of ALL opioid overdoses!!! But here’s the problem, government officials will never go against the public opinion, which is fueled by false studies. We as chronic pain patients need powerful advocates to speak on our behalf and NO politician is willing to take the chance. But we all know if any senator or congressman needed opioids for their pain they would most certainly not go without. God bless my chronic pain brothers and sisters. I pray for us all. Stay strong.

Bravo, Kelly Howard, on a focused and evidence-based challenge to the idiocy being pedaled by the Oregon Chronic Pain Task Force. Like the writers of the 2016 CDC Guidelines, this group of quacks has no interest in research that contradicts their political agenda. A short extract was also read in the September session, from one of my presentations to the HHS Inter Agency Task Force on Best Practices in Pain Management.

Probably the “Star” of the meeting was psychologist Beth Darnall, PhD, former President of the Pain Society of Oregon and a researcher on outcomes of voluntary opioid tapering for patients who want to reduce or withdraw from opioid pain management. She stated unequivocally that there are no published reports of positive outcomes from any mandated tapering program — and there are deep concerns for patient medical or psychological collapse when tapering is imposed upon people who are otherwise doing well.

For all readers: be aware that the Chronic Pain Task Force hasn’t given up their efforts to ban opioids for Oregon Medicaid patients. I understand that another meeting is scheduled for early December, and the public comment period has been shortened even further on their agenda. I suggest that it is time for all of us to write the Governor of that benighted State, demanding that the Task Force be directed to stand down from its scientifically unsupported efforts to ban opioids in favor of outright quackery in so-called “alternative” treatments.

Like mandated tapering, there is also no published trials literature to evaluate outcomes of replacing opioids with such measures as massage or Rational Cognitive Therapy. Thus the Task Force is proposing to do a vast experiment with potentially lethal results for tens of thousands of Oregon patients. This is malfeasance and medical malpractice on a grand scale.

Geoffrey Nielson

Bravo Bravo !

Debbie Nickels Heck, MD

Bravo. That’s the most eloquent, articulate article I’ve seen. It should be in the hands of every legislator in every state plus the President. Thank you.

IT’S A NATIONAL HEROIN/FENTANYL EPIDEMIC, NOT PRESCRIPTION (OPIATES) DRUGS.

SAD BUT TRUE: I have lost family members and friends, and I am always reading about too many young and old who have died from misusing DRUGS. It is tragic, for sure.

HOWEVER, I feel compelled to defend these prescription PAIN killers (opiates and others in that class) that are truly MIRACLE drugs for the 99% of the people who NEED/REQUIRE them and take them AS prescribed. Some people I know have been prescribed them for up to 10 years for chronic debilitating PAIN. They cannot live a quality productive life without them. They are 100% safe when used AS PRESCRIBED.
Please STOP blaming these prescription drugs because 1% abuse them. It’s the illegal street drugs HEROIN/FENTANYL that are killing our family and friends; very, very few from illegally obtained prescription (OXYCONTIN) drugs. It’s the HEROIN/FENTANYL, NOT the synthetically manufactured OPIATES;  i.e. OXYCONTIN.  Alcohol, which has killed and maimed hundreds of thousands of innocent people and destroyed families throughout the years in the USA alone, is a perfect example.

There are always those who will abuse whatever they have access to.  

Jerry Mangan

Excellent wtite-up!