People in Pain: Navigating Opioid Crisis Politics
If you told me that I would get a barrage of angry emails and social media posts for writing The United States of Opioids: A Prescription for Liberating a Nation in Pain, I would not have believed you . Who could possibly have a problem with my trying to change the conversation to solving the opioid crisis?
Whoops. Even before the book came out, I got a stream of surprising messages. They came from people living with severe and chronic pain, for whom the focus on opioids has made it difficult and, in many cases, impossible, to get the opioid pain medication they depend on. The messages boiled down to a common cri de coeur:
- I used opioids prescribed by my doctor responsibly for serious pain that I live with.
- The opioid crisis is about abusers: irresponsible people who took too much and got addicted and/or people using opioids illegally without prescriptions.
- Now my doctors won’t prescribe opioids or pharmacies won’t dispense them because of the abusers—and you are making it worse by conflating responsible users and abusers, stirring the pot, and calling unnecessary attention to the “crisis.”
One of the trickiest aspects of the opioid crisis is that at the same time that others were overdosing and becoming addicted, for many people, opioid medication was really working fine in managing pain and allowing for a night’s sleep. For these people, the problem is not opioids, but the focus on the opioid crisis, which has given rise to a DEA and state licensing board crackdown that has left doctors and pharmacies afraid to prescribe.
While we focus so much on the overdose deaths and people living with addiction, people in pain are the most commonly overlooked victims of the crisis, and not few in number. One in five adults—50 million Americans—report living in chronic pain. For one in twelve adults—20 million people—pain limits their ability to work and function most or every day. For people in pain, the neurobiological effect on receptors in our neurons and nervous systems make opioids uniquely powerful. They relieve pain in a way which no other medication can currently match (just ask anyone who depends on opioids for severe, chronic pain relief if ibuprofen or acetaminophen will do the trick for their pain).
Over the past 25 years of advising doctors on prescribing compliance, I’ve seen the pendulum shift on treating pain. In the 1990s and early 2000s, the pressure was on physicians to make sure people in pain got the medication they needed. This pressure reflected a shift from a half-century of concern about overtreating pain. In the early 2000s, doctors were disciplined by the state medical board of being too stingy with medication after patients complained. Pain was the “fifth vital sign,” which doctors and hospitals ignored at their peril.
Fast forward to the present and the pendulum has swung hard the other way. Around the country, tens of thousands of doctors and hundreds of pharmacies are currently being investigated for overprescribing opioids. Here in California, the Medical Board and the California Department of Public Health are reviewing death certificates for thousands of patients. They are cross-checking causes of death suggestive of possible overdoses (such as heart attacks) with medical records from doctors, hospitals, and coroners. The investigation is the broadest review of physician prescribing in state history. It encompasses more than 2,000 cases to date and has lead to licensing discipline and, in some cases, criminal investigations against hundreds of physicians. Add DEA investigations to the mix, and doctors are living in a climate of fear.
For many chronic pain patients who have been taking opioids with positive outcomes for years, the pressure on physicians is a problem. One pain medicine doctor recounted to me only prescribing higher doses of opioids for a small subset of long-term patients who have tolerated opioids for over a decade. This doctor prescribes in these cases because the patients are unable to taper off usage. Many more patients receiving long-term opioid prescriptions have been cut off altogether, as their doctors retire or simply get nervous.
In writing The United States of Opioids, my goal was to change the conversation by calling attention to the full scope of the current crisis, including the people living in pain and unable to access needed care. For some people, non-medication treatments offer promising alternatives. For others, opioids are the only thing that has ever worked well.
For these patients, the problem is that finding a middle ground to meet patients’ needs has become virtually impossible. The medical community has circled the wagons around the view that opioids shouldn’t be the first line option for treating pain. However, we are missing guidelines and protocols that would give doctors confidence on safe pathways to prescribe opioid medications to patients needing them on a longer-term basis.
The tragic consequence of this gap is that people in need of care are being turned away, suspected of being drug-seekers. It’s not just the doctors and emergency rooms that are turning people away. If you talk to any patient who depends upon opioids to manage chronic pain, pharmacies have become the most recent barrier to obtaining legitimate opioid pain medication. Many pharmacies are now protecting themselves by simply declining to fill any prescriptions for opioids. In other cases, pharmacies will not fill prescriptions until confirmation that the doctor has provided documentation of the prescription to the patient’s health plan. These hurdles, intended to prevent abuse, make the process of getting medications even more miserable for patients who are legitimately in need.
The long-term answer to this problem? I would like to highlight five things that we ought to be focusing on:
- Developing condition-specific protocols for the use of opioid medications to create clear standards for doctors to prescribe to people in pain without fear of disciplinary or criminal charges: You might think that protocols have been disseminated for how doctors can safely prescribe opioids. The CDC came out with primary care guidelines, but many doctors have complained that they are more useful as a tool for prosecuting doctors for noncompliance rather than simplifying the pathway for treatment. The bigger problem is that we need simpler guidelines for doctors to prescribe for a whole host of different conditions to liberate doctors from fear-based avoidance of pain treatment.
- Demanding access and reimbursement parity: One recurrent challenge is the lack of alternative pain treatment options. Even when clients find promising options, such as infusion therapies or neurofeedback, payor coverage guidelines often limit options by not covering forms of treatment. Reimbursement limitations also prevent physicians from extended discussions about non-pharmacologic options. One doctor I interviewed for my book said that it takes “30 seconds to say yes [to meds], and 30 minutes to say no.” There is a need for advocacy to enact mandates and expand access to non-opioid and non-pharmacologic treatment of pain. 2008 was the beginning of mental health parity. We need to campaign for pain medicine parity from traditional forms like acupuncture to new, technology-driven approaches and neurostimulation.
- Increasing research on pain therapeutics: We desperately need to advance research on alternative pain therapeutics, not just medications but nerve stimulation devices and digital tools. We need solutions so people in pain can sleep through the night. We need to push for the removal of regulatory obstacles, insurance coverage mandates for new devices and digital therapeutics, and expanded funding options to treat pain.
- Promoting integrative approaches to reduce pain: A growing body of research supports the mind-body connection pioneered by Dr. John Sarno, meaning that the way we think and feel can positively and negatively affect our biological functioning. Even as we advocate for more access to medication and non-medication alternatives for people in pain, there is an enormous opportunity to expand resources for integrative approaches. These approaches can offer a supplemental pathway to reduce the experience of pain, including in the workplace and communal settings.
- More public awareness and advocacy: The lack of attention to the needs of pain patients reflects a lack of public awareness. The voices of the 50 million adults in America suffering from chronic pain and pain advocates need to be heard. Expanding recognition and acknowledgment of pain will help drive government and healthcare policy away from the current anti-medication environment to a more balanced position.
Often when I share my perspective with people in chronic pain, people will reconsider that talking about the opioid crisis makes things worse for them. The current reality is an opioid media barrage in which it can be hard for voices proposing solutions to be heard. It will be through more dialogue about tensions and complexities, not less, that patients will get the treatment they deserve.
Filed under: General Problems
F1rocket,my heart breaks for you.what a horror!I surely wouldve felt homicidal to the”Dr.”your precious daddy got stuck with.I thank God his pain journey is now over.May he rest on the shoulder of Jesus.Amen
Over the years and being a patient and an advocate what I have seen more of than anything else is the fear the overseers have instilled in the doctors and PA’s. This is I think the main problem. A bit of history first. The prescription field was put into the Substance Abuse ACT. At the time they (government) had no idea of where to put the prescription portion of controlled medication, so they lumped it in with all the rest of controlled substance law.. The people/DEA know nothing about prescription medication. What would make it so much easier is to move prescriptions into it’s own category. It has no business being in a category as drug cartels of which it is now. Is this idea easy yes and no. But I feel it needs to be done and overseen by some other area of government (it has to have some over site). As of now they over see, the making, distribution, how much doctors should or should not be prescribing. First they are not doctors and they aren’t even using correct information. So the FDA already has their hands in all this and oversee medical issues including what happens within the prescription world. So how about take it away from the DEA and put it into a group that understands the prescribing part of medicine and chronic pain. Let me say I don’t think anyone should be telling our doctors what to prescribe or how much etc. every person is different so all our treatment plans are going to be different. We as patients need to keep perfect records of what we have tried what worked and what didn’t and dates/places. We need to understand doctors have more than us to deal with and no way can they know everything about everyone all the time. The government has seen to that with all the paperwork they demand. I know the DEA has no idea of what the right numbers are, what drug is good at what dosage etc. so why are we and the government allowing this crap to continue. Because we all have allowed this to continue to handled under the DEA it’s time we put it all in a category that is correct with the people making decisions have the right medical background and how to do simple math. This situation can be done right along side with the new HHS pain task forces recommendations.So people let your government know if you’re having a problem with your care let them know so maybe correct laws can be changed and moved into an area that has the knowledge to help us all. We all need to make sure state and federal know they wanted the HHS to go over and make decisions on pain so they did now lets make law….. Ok I could go on forever but I’ll leave it here. Good luck.
Just read the bio of the author; if he actually cared about people in pain, he’d stand up & lay into everybody responsible for this criminal travesty by filing LAWSUITS, rather than writing a moronic book hoping to hop on the “opioid crisis” gravy train.
This person is still missing the boat completely:
!his first recommendation, “Developing condition-specific protocols for the use of opioid medications to create clear standards for doctors” does nothing for the problem & makes no frigging sense. It’s another way of delineating “one size fits all” prescribing –“Condition X can get up to Ymg per day.” Asinine & ignorant.
A. It completely ignores the fact that many CP people have multiple conditions –one reason why many are in so much pain.
2. Has this clown never heard of the fact that people aren’t clones? Even if you ignore genetic variations –which you can’t– you can’t legislate dosages; gender, age, size, past pain med history, & so many other things make dosages wildly variable.
Also, he talks like we just pounced on opiate pain meds first thing: I don’t know any of the hundreds of pain patients I correspond with who didn’t try everything else under the sun first or in conjunction with pain meds.
Argh, hit wrong key. No proofing, wasn’t finished.
Another also:
“Increasing research on pain therapeutics:” why do all these “here’s the answer” types think that no (or little) research is being done already? Pharmacos know damned well that coming up with an effective, no-possible-addictive pain med would be better than finding a gold asteroid.
“Promoting integrative approaches to reduce pain” Brilliant. Who’s gonna pay the zillions for that? They already want us to kick the bucket to help balance the budget.
Obviously this clown is incapable of coming up with any new ideas & is trying to get the number of outraged complaints reduced
Another great article. Steve I was hoping I could ask if you would join a group that is making “noise” and we are starting to be heard. The group is “Don;t Punish Pain Rally.Com” It was only formed a few months ago and there is at least 10,000 members and growing. I think being in the “field” you could give advice or point people in right direction in the fight.I ask everyone in Chronic Pain to join. Each state has its own chapter. I hope you would consider this request. Thank you for all the attention you are bringing to this absolute wrong being done to pain patients
Is anyone here able to really depend on opioids to relieve their pain? I know I cant. Not with the attorney general’s cracking down on legislation built on faulty statistics and straight up lies. Im in so much pain it woke me up at 3am couldn’t hardly even see I was literally blinded by neck and head pain caused by failed surgery. My life is a living hell with the amount of medication I do get I still have to pick and choose carefully what days I get barely some relief. For which im grateful because suicide is still an option for me and if my meds get took im as good as dead and I know I speak for a lot of people when I say that!
Thank you F-1 Rocket Engine!! I agree with all you’ve said, & in my case, & many others I’m sure – I tried EVERYTHING…., EVERYTHING/alternative, etc. to ease this pain…, I did not WANT to be on meds, never dreamed I would ever be, & hated to even take aspirin! I was a totally “natural medicine” person until “natural medicine/herbals, etc did not even begin to touch the intensity of this pain which stopped my life right there (the “transition” was just starting as well, & doctors were accusing me of being a ” drug seeking person! OMG!! Me???!!! The local NYS, Nationally Certified Massage Therapist whose sacred work was to help ease others pain, discomfort, and /or to help enhance their health!?… )
It is challenging to find words to express/explain, the amount of disbelief (which easily turns to anger/rage..!) I feel at the continuation of this historic, horrific, holocaustic-type crime/propaganda, etc. as this, along with infectious disease/TBD’s (tick borne disease) on the rise, which CAUSE horrific pain/disability (which ends up being “chronic” in majority of cases)
…”They” know “stress is the #1 cause of lowered immune response, which leads to “opportunistic” illness, disability, death”, & have done a great job at the “entrainment”/hypnosis of the masses to believe not only this untruth, but many…., I have been harmed in every possible way by this medico-political system for over 10 years now, & am wanting to somehow move forward with legal action (it’s difficult when even friends believe that prescription drugs for pain are causing a “crisis…”, that is, maybe until they need them….) ….furthermore, I dont know about anyone else, but the pain meds I AM prescribed are of WORSE & WORSE QUALITY EVERY MONTH, barely working at all, with more side effects… I want these pills analyzed but dont know who could or would do it that would tell the Truth!! (I would like to know/hear from anyone else who is experiencing this…)
I now believe that “they” dont, or wont care if a doc prescribes–because it isnt “real” opiate medication anyway!!!
So much more to say, but of course, once again the allotted energy I have is gone & I need to rest! Thank you for listening/reading this… I will continue to try & find ways to help turn this around….
:-/
We had clear protocols in place called the CSA,,,WE HAD CLEAR LAWS,,”the government SHALL NOT INTEREFERE W/THE PRACTICE OF MEDICINE,,EVER!!,,,THE DEA,DOJ IGNORED THEM AND THE DOJ ALLOWED THEM NOT TO FOLLOW THE LAWS OF THIS COUNTRY,,,,,, SOO it will not matter unless they go to prison for violating the laws of this country,,,jmo,,maryw
Although the letter states the obvious,it is well written.What a tragedy that those in control ignore common sense.There is no more an ‘opiod crisis’now than there was 10 or 20 years ago,or even 50 yrs,Nobody looked askance at our heroic veterans when they were destroyed or broken by injury!!And now suddenly they too are “addicts”?We owe them all and EVERYTHING.Dont forget that!I would have figured that the billionaire drug producers[large med.companies]would have hired high-octane attorneys to defend their products that are so badly needed.If anyone can fight,it’s them.I admire the firm resolve of Pres.Trump-the last Pres.promised”change”for 8yrs.that never happened…but Trump is being fed “fake news”about opiods.As he visited the flooded farm states,he must also visit homes of disabled and hospitals!Meanwhile,thousands of uncontaminated opiod meds languish on shelves,and those in pain grind their teeth and wait for the hours to pass.All due to 2%of an irresponsible populace.What a paradox.I urge you all to continue calling the White House comment line 202 456 1111.F1rocket engine,excellent reply.I would have been amused but it is all so tragic.God,Help us
“Developing condition-specific protocols”. I think that is for the perfume world. THIS world stinks – severe neurologic pain or not, because of greed and theft.
We have enough now to lean correctly to the effective, safe, fast, cheap relief that is opiates for severe pain. We got MRI and CT and X-ray, we can see if someone is limping or crying.
You break and arm or rib or get in a car accident or your spine sort of looks like an explosion in a tinker toy factory, and the patient is hollering ‘severe pain!’ …you don’t need to put that under a microscope.
I say “opioid crisis” is solely the invention and was thought to be a ‘good idea’ by the Attorneys General and their satellite investors after kid ODs went up from the immense increase in smuggled fentanyl and other drugs and said kids fatal clumsiness.
SO, …DEA/DOJ out first, then we sue the crap out of doctors and pharmacies and hospitals that cower to this sophomoric, bottom feeding, money making ploy and return ALL cut-off and cut-down severe pain patients to a dose they can prove they had USED when they did not have to join ‘pain movements’ for a tiny scrap of hope.
F1: yes to all you said. Plus, they GOTTA stop torturing the injured, post-surgical patients, & the dying by refusing short term pain relief because 1% or less might get addicted. I’ve been watching a good friend who’d pray for death if the person wasn’t very religious, because they’re in agony from being denied pain meds after major surgery & a bad blood clot in the lung.
My mother died in unspeakable, monstrous agony, & there was NO possibility that she was anything but dying from the leukemia. Still waiting for anyone, anywhere to inform me how putting her through nearly a month of sadistic hell saved even one recreational drug user from using, or ODing, or anything else. No one will be able to tell me b/c there was NO EXCUSE for what they did to her.
They murdered my Father in his hospital bed. His Doc cut him off, his health plummeted, he was withdrawing in the hospital and with his own old school shame about opiates and complete dis-education about withdrawing he basically went crazy. They finished him off pretending to do a experimental heart valve repair he most certainly didn’t need and sliced open his femoral artery for the catheter. His blood pressure never came back up and he died begging to die. I wasn’t there thank God or there would have been two dead. They tried to stop his breathing in front of me before this to try to make it look less like murder. Before that they ‘tubed’ him just to shut him up. I said he didn’t need that but just wants his back pain relieved. Doc said “If I take it out, do you promise he will behave?”. I said yes of course, but he was in too much of a panic. All because he was being under-dosed and asking for more simply invited cut-off.