A Review of the Pain Management, Best Practices Interagency Task Force Draft Report; the Good, the Not so Good, and Where We Go From Here

A Review of the Pain Management, Best Practices Interagency Task Force Draft Report; the Good, the Not so Good, and Where We Go From Here

Author, Needless Suffering; How Society Fails Those with Chronic Pain

Introduction:

The Comprehensive Addiction and Recovery Act (CARA) was passed by the US Congress in 2016. The first provision of this law was to create what became known as the Pain Management, Best Practices Interagency Task Force (PMBPITF). While it may seem a bit odd that a broad look at pain management would be provision of a law looking at the issue of addiction in America, it is actually a very good first step in helping to create a public policy balance between the issues of chronic pain, which affects over 50 million Americans, and opioid abuse disorder, which affects fewer than 2 million. Both problems are pervasive, yet poorly managed in our culture. The following is a commentary on the Draft Report released by the Task Force.

Background:

The popular narrative is that the explosion in opioid prescribing and opioid abuse over the past twenty years is due to excess prescribing from doctors, excess expectations of pain relief from those in pain, and greed from the pharmaceutical industry. While this narrative is not entirely false, it greatly over-simplifies a complex social situation. Beginning with the passing of the Harrison Act in 1914, chronic pain became viewed as a character flaw and addiction as a crime. To seek relief, those in pain frequently had to take to the streets to obtain medications and other care which was not forth-coming from the medical profession, risking a criminal act and the ramifications that go with that. By the mid-1980’s, this mind-set began to change for end of life care and by the late 1980’s, the same could be said of both acute and chronic pain. Pain could no longer viewed in the health care industry as a character flaw and both the legal and health care industries issued statements that those in pain should not have to suffer.

The problem was a lack of effective therapies beyond opioids to meet these expectations. Even if there were effective alternatives, frequently there was a lack of access to these. This lack of access led to an explosion of opioid prescribing in the late 1990’s. The most feared consequence of opioid use/abuse is addiction. While the risk of de novo addiction to opioids has been and remains greatly exaggerated, opioid abuse/mis-use and diversion became increasing problems, as has been unintended overdose deaths due to opioid alone or, more commonly, multiple agents simultaneously, both prescribed and un-prescribed. A lack of health provider education about pain management, in general and opioid prescribing, in particular, aggravated the problem even though most states, by 2000 had passed opioid prescribing rules which had first been created by the Federation of State Medical Boards in 1998 (revised in 2004, 2013, and 2017).

The call for alternative therapies for pain management including multi-modal care began early in this process, but first became public policy with the passing of the Pain Care Policy Act in 2009. This act led directly to the 2011 Institute of Medicine (IOM) report entitled Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, which then led to the National Pain Strategy (NPS) released in March, 2016. Similar policy statements came from the CDC with the March 2016 release of the CDC Guidelines for Prescribing Opioids for Chronic Pain, and from the National Academy of Sciences, Engineering and Medicine report Pain Management and the Opioid Epidemic: Balancing Societal and Individual Benefits and Risks of Prescription Opioid Use, also in 2016. The Consumer Pain Advocacy Task Force (CPATF) also released their “core principles” around this time, one of which states: “effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health, and complementary medicine.”

What I find most concerning from my experience speaking to health care providers and legislators all over the country is how few individuals know these efforts exist.

Overview of the Interagency Pain Management Best Practices Draft:

With this as a backdrop, the PMBPITF draft report was released in early 2019 with a window for public comment until April 1, 2019, and the final report is to be released in May, 2019. All the reports referred to above, including the PMBPITF draft, make a statement similar to the FSMB report of 2013:

“There is a significant body of evidence suggesting that many Americans suffer from chronic pain and much of that pain is inadequately or ineffectively treated… Undertreatment of pain is recognized as a serious public health problem that compromises functional status of and quality of life. A myriad of…factors-including inconsistencies and restrictions in state pain policies – can either facilitate or impede the willingness of physicians to manage patients with pain.”

The purpose of the PMBPITF draft is to take a comprehensive, though not thorough, look at how we manage both acute and chronic pain in America, and to “determine whether gaps in or inconsistencies between best practices…exist and to propose updates and recommendations to those practices.” While that is the mission, that is not really what the report accomplishes. In reality, the report does not create best practice. Rather, it lists a series of modalities categorized by:

  1. Medications
  2. Restorative movement therapies
  3. Interventional procedures
  4. Complementary and integrative health
  5. Behavioral health/psychological therapies

It states that the list of modalities reviewed is, by design, not exhaustive, given the innumerable modalities present, nor is evidence for each modality listed exhaustive. Gaps in understanding of each modality and each category are listed as are recommendations to bridge those gaps.

It should be stated at this time that the report attempts to define “best practices” based on evidence. It is generally recognized in pain management that the evidence base for nearly all modalities and practices is limited. Most modalities help someone, none help everyone, and most patients require multi-modal therapy, all of which makes scientific study more challenging. The unique set of circumstances that each patient presents further complicates the use of evidence based medicine in this setting. Therefore, the best that can be done is develop best practices which are adaptable to individual settings and over time as evidence accumulates. The Draft Report, to its credit, acknowledges these limitations.

Unlike the CDC report which is broadly criticized for its exclusivity, the authors of the Task Force Draft Report include a broad array of stakeholders – including a pain patient. This does more to ensure all voices are heard.

The critical and most important feature of the Draft Report is its overall focus on increasing access to all pain management techniques for all those in pain, no matter their social station. The report acknowledges that opioids have a role in pain management, but by creating more options, including multi-modal care, the overall need for opioids will diminish.

The strength of the report comes with what it does emphasize.

  • Balance between the needs of those who suffer from pain, addiction, and mental health disorders
  • The need for individualized, comprehensive, integrative, multi-disciplinary, bio-psycho-social care
  • The need to address and minimize disparities in pain care
  • The need to de-stigmatize those who suffer from chronic pain through public and professional education.
  • The need to improve access to care in all the categories mentioned above.
  • The need to increase the workforce of pain management providers across all disciplines
  • The need to increase innovative strategies to improve access to pain management services
  • The need to increase research in pain medicine techniques
  • The needs of “special populations,” forcing the reader to look at the complexity of pain from the young to the old, male/female, rural/urban, veterans, acute/chronic/end of life, etc.
  • The benefits/risks of opioids and public policy are discussed in two separate sections emphasizing the unique aspects of this set of pharmaceuticals. The report discusses how public polices generated from the CDC guidelines have harmed many patients including death due to suicide, and recommends changes in that guideline to reflect recent evidence. Because of the carnage created by public policies inappropriately modeled after the CDC guidelines these are critical and important statements.
  • The section on behavioral health/psychological therapies is unique, comprehensive, and important.
  • One cannot overstate the importance of the recommendations on public and professional education.

The weaknesses of the report are:

  • What this task force has started is unique and extremely important. However, the statute states specifically that “the task force under this section shall sunset after 3 years.” What happens then?  This is important because too few are aware this effort exists. Similarly, the National Pain Strategy was released by HHS the day after the CDC guidelines. Very few have ever heard of the NPS including many in the pain care community. The NPS currently exists in name only and that is a problem. The PMBPITF has adopted many themes from the NPS, in effect keeping it alive. However, there needs to be assurance this effort will maintained in some format. This report cannot be an end, but, rather, a start of a much broader, more constructive social dialogue.
  • Related, this task force has no rulemaking authority.
  • This report does not really define best practice. In an area of limited evidence, that is a challenge, especially when the consensus is that multi-modal care is needed. This is an issue because increased access is dependent on insurance coverage. Insurers want evidence. While it is quite true that insurers cover many therapies that have no clear evidence of cost/benefit, they do require evidence to justify psychological, behavioral, complementary, and inter-disciplinary therapies. While this may not be fair, it is real.
  • Similarly, many potentially effective therapies are not considered.
  • The literature review of many modalities is not exhaustive. That is most likely beyond the capabilities and time frame of this task force.
  • The section on interventional therapies grossly over-estimates their cost-effectiveness.
  • The section on complementary therapies could be more inclusive
  • Grieving is an important part of adaptation to persistent pain. Supportive counseling for patients and family is critical, but often neglected. This should be included in the section on behavioral health/psychological interventions.
  • The very important role of support groups in helping those in pain adapt to the bio-psycho-social challenges they face is both cost-effective and critical. This is not mentioned in the report and should also be included in the section on behavioral health/psychological interventions.
  • While many important recommendations are made, there is no suggestion on how these are to be followed up on. Again, using the NPS as an example, change only happens with perseverance. There needs to be strategy to make sure this happens.
  • One of the major problems with disability care in general, and pain management in particular, is a fragmented health care system lacking in continuity which over-rewards those who piecemeal and proceduralize and under-rewards those who manage complex problems. It is critical that those who manage pain care be empowered, and the report does not discuss this.
  • Increasing man-power is a critical recommendation. However, there is no clear recommendation on how to make this happen. Pain management is a challenging field and there needs to be incentives to encourage providers to go into it. Assuming a fixed economic health care pie, the only way this will happen is to re-distribute money from those who proceduralize care to those who manage care. In addition to improving remuneration for those who manage pain, addiction, disability, and mental health problems, those willing to go into those fields should receive educational and practice set-up subsidies. Solutions of this sort are not addressed in the report
  • Perhaps the most striking omission of the report is there is no mention of medical cannabis. While the use of medical cannabis is against federal policy, over 80% of Americans support its use. Thirty-three states and the District of Columbia have legalized medical cannabis. Over sixty percent of those who use legal medical cannabis use it to treat pain. There are studies which have suggested that medical cannabis use is opioid sparing and that the rate of opioid related deaths have declined in states where medical cannabis is legal. While evidence for medical cannabis remains limited, primarily due to legal and bureaucratic obstacles to proper study, this is a very important medical and social issue and a statement about the current state of scientific knowledge, gaps in knowledge, and recommendations for further study should have been included.

The PMBPITF draft and report to follow are critical to the success of improving how we manage pain in America. It is nearly impossible for a report of this type to be fully comprehensive. The report has been built on the backs of the previous reports referred to. Unlike several of those reports, this effort cannot cease when this task force “sunsets,” and it deserves our universal attention and support. PLEASE take time to review it and offer commentary.   The following are ways to do this:

  1. Submit through the Federal eRulemaking Portal at http://www.regulations.gov, Docket Number: HHS-OS-2018-0027 (If Regulations.gov is inoperable, as a secondary option please submit your comments to email noted below.)
  2. Email to: paintaskforce@hhs.gov (Secondary method)
  3. Mail written comments to:

U.S. Department of Health and Human Services
Office of the Assistant Secretary for Health
200 Independence Avenue, S.W., Room 736E,
Attn: Alicia Richmond Scott, Task Force Designated Federal Officer
Washington, DC 20201

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Authored by: David Nagel, MD

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Holly

Same ole Same ole……I’m so sick of this [edit]. Doesn’t anyone realize anytime the whoevers are going to do another report, study, our comments are welcomed, then the results come in and nothing has or will be changed????? How many of us who are suffering needlessly thought maybe something will change soon and we wait again after all of us commented and explained how we hurt and have been cut off, or cut back drastically, then that bubble has burst again? No one cares! Its all about politics and money! A veteran having a leg amputated, and was sent home with no pain medicine….are you kidding me????? That hospital should be SHUT DOWN!!!!! At the very least, sue the pants off of them How can this be? How more hypocritical can it be? Alcohol is legal, pot is now almost legal everywhere, they giving suboxone out like candy and its being sold and abused! They see the big picture but they don’t care!!!! ! Fentanyl pouring into the country and people dying but they go after a healthcare person for a legal prescription? LMFAO! I know one thing. These [edit] aren’t leaving this world with there monies and will face there maker!

Why can’t we put an attachment to our comments showing test results that prove our
painful medical conditions? ie: skin biopsies showing severe small nerve fiber neuropathies, tendon ruptures, extremely low testosterone numbers post Levaquin adverse reactions, etc? It would give greater credibility to our statements and critics could not be given opportunity to critique our pain experience and suffering. thank you.

Niese Cramphorn

Our government is well known for creating panels to make recommendations but give them no power with which to implement the findings. I live in Oregon which has taken to suing physicians that specialize in pain care due to their opioid prescribing regardless of the percentage compared to other modalities prescribed. I have searched up and down the west coast of this country and I am yet to find a physician that will take a new patient that is a chronic pain patient of excess of 40 years. Let alone the fact that I am on opioids. I did find one doctor that would put he wanted me to totally change my care, medications and go off all medications “cold turkey” at home. I did not agree with his protocol for my care. Thus I am with one of several physicians who are being sued by the state of Oregon, County of Multnomah, etc. He has reduced my medications by over half without tapering but rather cutting. I have tried cannabis but it is so expensive and not covered by insurance. My life has changed so dramatically it is hard to even describe. I seldom leave home or drive if I do. I am back to taking large amounts of OTC analgesics and Ibuprofen to subsidize my opioids. I do not see family or friends as they do not care to watch me suffer in the pain. I have seriously considered suicide.
This frustrating and inadequate system that has me caught where politicians & lawyers have control over my care then the physicians and I do.

Like J.D said all of us have learned to accept pain because we’ve had to deal with it for so long. Along with if we need to lose weight but gone that route we’ve gone the route and physical therapy massage all the alternatives to no avail and yet these people who tell this as the miracle cure has been drinking the Kool-Aid too long. They believe their own hype so much that they are brainwashed. And what they want to brainwash us and we’ve already done this how many times do we have to jumped the Rope before we tell you that it’s still not working. They don’t have a cure for pain, they can massage to the leg falls off but it didn’t work !!!! Their head is so thick that they don’t listen that we have done this stuff alternatives for pain probably way long before we ever sought help for pain. And when we couldn’t do it ourselves we sought help but now there is no help. Just the same old rhetoric.

J.D.

I originally had hope that this entire mess might be slightly helped along to the point that actual semi-relief from pain would be available again but as it stands, all I read about are more reports, conversations and panels/groups that are going to gather to go over the same rewritten reports and conversations while those of us that are in pain and trying to get help are being told by “pain management specialists” how we should learn “pain acceptance” as if dealing with this pain for 20+ years isn’t acceptance then I don’t know what is. Along with that we are told to try to “breathe through the pain” and to “visualize a comfortable place” while meditating, getting hypnosis, and of course allowing them to attempt to burn out more nerves if they can even manage to hit the right nerves and not cause more problems and pain.

Actually pain management is so tough. Back pain , neck pain or whole body pain can pressurize mind .

Tabitha Boan

The solution is simple. Have health insurance cover the effective treatments for pain management other than prescription pain medicine. Integrative and complementary medicine need to be taken more seriously. There is a growing necessity for the advancement of better practices for pain management and health maintenance. Different disciplines of holistic medicine working together for one goal: Pain relief and management.
Disciplines include:
Massage Therapy
Chiropractic Care
Physical Therapy
Personal Training
Nutrition Education
WE SHOULD INCORPORATE ALL

For example:
patient presents with right hip and leg pain and is diagnosed with sciatica. (Very common – no specific individual)

Discipline
Assessment : common treatment

Massage Therapy:
Assessment: trigger points and tension through the right deep hip muscles specifically piriformis. Right hip outward rotation
Common treatment: trigger point therapy, compression with motion (active and passive) applied to affected muscles. General hip stretches
Physical Therapy:
Assessment: very specific degrees of limited range of motion through right hip, weak muscles through right low back specifically quadratus lumborum and hip stabilizing muscles.
Treatment: therapeutic and specific exercises to affected muscles. Stretching and strengthening to balance posture to optimal health.
Chiropractor:
Assessment: L4-L5, L5-S1 nerve roots out of alignment
Treatment: spinal adjustment

Every discipline treated this person differently, but all can lower pain.
Build on this for chronic patients. Why did this pain occur? Do they work in a factory line constantly moving something to the left side of their body? Do they have poor posture when driving? What muscles need to be built up to avoid future pain bases on the individual? Personal trainer and physical therapist can work together to form a treatment plan. Overweight? Nutritionist. Start with the least invasion treatment.
MUTIPLE DISCIPLES COLLABORATING TOG TO TREAT PAIN.

Ali

Where is the Patient Pain Panel?
Where are 10 patients on a team to work with the powers that be who decide if we who suffer difficult chronic pain are worthy of pain meds. The powers that be have studies, laws, regulations, etc to sit on a team to evaluate who, what, when, where, and why the use of pain medication should be prescribed to chronic pain patients that are taking it as prescribed.
We the chronic pain patients live 24/7/365 waiting, scared, crying, depressed, can’t focus, and decreasing our activities due to decreased medication due to physician’s who are scared for there legitimate practice.
This is physician and patient bullying to those of us who follow the rules.
The powers that be have become bullies to those who obeyed, followed the rules, and had a good life on the medications prescribed legally.
We have been protrayed the enemy of the medical professionals who are the powers that be that are bulling us.
Being a septagenerian been down this road to many times. Now what life is left will be in fear 24/7 that my bullies are going to win.
My physician and care team are great but like me living scared.

Maggie King

On the Gulf Coast of Mississippi, prior to 2014, there were a max of 10 legit pain management clinics.
First the Motrin was cut 50% in hydrocodone and oxycodone. THAT was way overdue. In 2016, at every office, every patient’s dose was cut. I went from 135 10mg hydrocodone to 120 to 90. My ROM and quality of life were impacted, but tolerable. There had been no lessening of pain, just doctors being proactive.

The final cut in 2018 to my opioids was another 25% cut again to less than 25mg hydrocodone a day. They had also cut my Clonazepam (for severe PLMD) and Flexeril (apparently an abused drug too). The final blow was my MD of 6 years retired early, “guidelines” were sending criminal MDs running but also caused just about all MDs to reevaluate and restrict opioids.

Hundreds of us were given a list of referrals and a month of meds.
2 clinics have my med records, along with 100s of others. 8 months now and MD has not reviewed my case. 2 more only do steroid injections. I will do injections 3x a year but these guys would rather stick needles in a spine than RX 60 pills. 3 clinics just up and barred the doors.
For the last few years, we have been treated with suspicion, hostility and contempt by clinic staff, MAs, NPs, MDs. The pharmacy staff and pharmacists are the same way. If your regular pharmacy is out of opioids and you are forced to try another, you are denied, and note in your file that you are “drug-seeking”.

Forced tapers, cold turkey, arbitrary cut offs, unilateral decision making have made CP patients lives a profound struggle. My family actually cheer when they can get Mama out for a short lunch…. I’m only 62. Good days are rare…..for NO GOOD reason.
Help!

Nowork

As a pain endurer for the last 34 years and due to endure pain every second for the rest of my life, I have been forced to ‘go back’ to the beginning of treatment for my ‘lifetime medical’ agreement in a California workers comp claim. In the infinite wisdom of the legislature, lobbyists and governor has made my doctor of 10 years ‘ask’ for a medication or procedure (physical therapy, psyche treatment, TENS unit, trigger point injections, epidurals) and get a denial for that care by a ‘doctor’ who does not read the reports sent and has not EXAMINED me at all. When more information is asked for and provided, again, the denial is upheld 90% of the time. The problem is not having a level playing field due to my having about 4 hours per day to ‘deal’ with life, and not being able to get legal help other than trips to law library because the ‘claim is older and there is about a yearlong piece of work and no money for doing the work’ (excerpted from letter from attorney after phone conversation).
Tried the opioid route after spinal fusion failure in ’98, then stopped ALL pain meds in 2012 by use of cannabis, and have continued to use forms of cannabis extracts to help through the day/s. More research monies needs to be spent into the medicinal properties of the cannabis plant.

Part 2: what aggravates me the most no matter what physician you see they all stay within their own criteria and do their own treatments but are not willing not any of them to do additional tests to find out what is really wrong with the patient so how about that for best practices. Instead of letting someone suffer for so many years. And pain clinics want to talk about doing massages and physical therapy and all this alternative stuff but they want don’t want to talk about doing MRIS or nerve testing. Dr. Nagel mentioned that marijuana weren’t brought up for Less opiate use . well this is what I think that the pain clinics and the government is all pushing for marijuana and that’s why they have tapered opiates it’s not for drug abuse we all know that because it’s the street drug that’s killing people it’s the fact that they can make more money and that if they have the people that need the opiates down to the point that their suffering we be willing to buy the marijuana and so they’ll be opening up their little marijuana shops and making even more money and cutting out the opiate manufacturers is what they’re doing. I grew up on a farm and so all you need is good farmland and these doctors have enough money if they don’t already have Farms to grow their own marijuana and just hire a few Foreman. They can cut out middle man all around. the pain clinics have their doobie shops plus making money off the insurance companies with their Chiropractic , massage alternatives and the government makes taxes off of everyone.

With those numbers above how is it that two million can dominate the government’s interest over 50 million . the 50 million have to be under treated / no treatment bc of the 2 million addiction. And then all these new guidelines have to be created bc of the 2 million. The 50 million have to pay the cost physically , mentally , financially & with ending their life bc of 2 million. I told my family doctor that I’m very much afraid of having hip surgery due to the fact that I was told that I’d only give be given 10 mg of some type of opiate & then it would only be 50 mme. 10 days worth , W/ no refills & I said I cannot possibly with having intractable pain have surgery & go thru physical therapy with very little pain management. I also have several back issues with nerves being pinched unfortunately my back just went out. My pcp said well the surgeons are afraid of losing their license & I said well they should be afraid of losing business bc the only people they’re going to get are ones w/fractured hips bc I may just deal with the pain until I do need hip replacements. Lord knows I’ve been dealing with it for 15 yrs & all I kept getting was spinal injections bc the PC would only look at my spine & not do any other test even though I complained multiple times on several different Physicians death ears. Once you get labeled with fibromyalgia everything becomes that one label with whatever problem you have even dvts. So the government overreach is also affecting patients surgeries & surgeons incomes. Who wants to go thru surgery & say yes I would love to suffer afterwards so you don’t lose your license. Before I knew I was to have surgery I spoke to many people who had surgery & said they were left to suffer afterward & we’re told to take Tylenol even though they had bone fractures. I guess they’re saving us all from becoming addicts that’s what my PCP said. We’re like a snowflake in hell no chance of survival.

Jul

I agree with Lindsey and Gary. Seems like a lot of lip service. As a fellow CPP, these “modalities”which are mentioned have been used exhaustively by CPP’s and we have lost access to ANALGESICS which have been tried and true for decades, centuries as a pain moderating treatment.
Playing this obscure waiting game is another stall on the part of HHS, CDC and other regulatory agencies. Nothing is being compiled to work for Chronic pain issues.
We are tired and STILL remain in pain without much, if any solution to our ongoing situation.

Thomas Kidd

People like me were not even considered. I have been on Methadone for more than 30 years and cannot be weened off it, even if an alternative was found. I and many people like me will be left to die. And sadly it seems no one gives a damn. No wonder people go to the streets and commit suicide.

One major issue in Opioid Use Disorder that is commonly ignored, is comorbid Major Depression. A century ago it was common to treat major depression with low dose codeine. Today many clinicians are uninformed about why this frequently was effective for depression.

Noted attorney Abraham Lincoln suffered depression and considered suicide. He recounted in a letter, putting “Sweet Hemp” in his pipe and smoking it, getting relief from some of the depression symptoms.

Losing track of the fact that mental disorders can be as distressing to people as bodily pain can be, we fail to comprehend why people self medicate for mental health issues, with whatever drugs they can find. Yet it’s largely the fact that street drugs are overpriced, dishonestly marketed, and of poor quality that causes many of the resulting deaths. Mental health care is necessary for many people and would save lives if people sought it sooner.

ELM

I was concerned by the insistence on “multimodal” approaches the task force presented.

While alternative therapies can and should be offered to the patient and covered by insurance, patients should NOT be forced or required to participate in injections, chiropractic adjustments, or psychotherapy in order to receive opioid medication. We don’t need another barrier to access medication.

Even with insurance coverage, muliple modalities subject the patient to many co-pays and multiple appointments per week. These are disruptive to work and home life and not financially practical.

Many people in chronic pain may not drive, rendering them unable to attend so many appointments, or at the very least, dependent on others to drive them, resulting in a loss of Independence and further burden on the family. (Most of us who have a chronic illness already feel like a burden to others).

And those who are functioning well with opioid therapy are better served from a physical and mental health standpoint by actively joining society and participating in activities they enjoy, not attending many more doctors appointments. Nobody wants to spend their life at the doctor’s office, it’s depressing!

Additionally, the patient who is doing fine on opioid therapy and is not interested in alternative therapies should not be viewed as “unmotivated” to recover. Doctor’s should not be able to take a dismissive attitude towards those who are suffering, and instead insist they use “mindfulness”.

We seem to have forgotten that by it’s very definition, chronic illness/injury and pain means that the patient is never expected to recover. It’s chronic. The best we can do is keep people comfortable, and yes that means opioids sometimes.

I need this more then you will ever know. My hell started in 1991 and has only gotten worse a lot worse. I could write several books on what I have been through. This doesn’t even include my childhood. That’s another story.

Thank you Dr. Nagel for a very comprehensive & informative article. In the wake of how the CDC guidelines have impacted the Chronic Pain Patient it’s good to know that their are people like yourself working to make things better for all #CPP.

I would love to see more Real CPP be involved with any committee or group that is working on the issues created by the CDC GUIDELINES.

Than you Dr,

John J Sandhèrrr

Kris Aaron

My father suffered for years with chronic pain caused by an untreatable neurological condition. He absolutely refused to take opioids, insisting “I ain’t no damn junkie!”
He became an abusive, dysfunctional cripple determined to make others suffer as he did, alienating and then driving off family and friends.
Apparently, the government and anti-opioid warriors like Andrew Kolodny of PROP considered that preferable to using opioids for pain. There is a literal fortune to be made off drug “rehabilitation” facilities and supposed alternatives to opioids, which may be motivating the current hysteria over addiction. The fact that the vast majority of overdose deaths are caused by illegal drugs is considered irrelevant.
Pain patients who depend on opioids to control the agony of broken bodies have become “collateral damage” in the war on drugs. We are considered a burden on the system, and are either treated as addicts or offered expensive and often useless alternatives that our health insurance (assuming we have any) won’t cover.
Perhaps it’s my imagination, but it appears that physicians were pressured to stop prescribing opioids around the same time that cannabis was starting to become legalized in more and more states. Could it be that the Drug Enforcement Agency, which depends heavily on cannabis arrests and convictions to boost their enforcement statistics, is concerned they’ll be looked on as irrelevant by lawmakers when it comes time for next year’s budget hearings?

Doug

Interesting article. We need training focused on the entire patient not just the procedure guy who transfers the patient back to sender. Creates confusion and loss of precious time and patients get discouraged as well as health care workers…..I guess ideally we need “Marcus Welbys” specifically trained in all aspects of pain management and not just docs who know how to stick a needle here or there……..maybe. you think?

Yolanda Castillo

I have been a chronic pain patient for more than 20 years. I have a BSN and until 2015 was a critical care nurse. I remember when the initiative to make pain the 5th vital sign which had to be assessed at least every 2 hours in my area was put in place. I have always been aware how devastating pain can be but until I experienced it I became fully aware of how deeply it can affect one’s life. My primary care Dr. prescribed an opiate for me which made all the difference. The quality of life was so much better and I was more productive. I never abused them, never requested refills ahead of time, and never asked for an increase in dose. After approximately five years when the opioid “crisis “ became public enemy number one, he decided to just stop prescribing them anymore. I didn’t realize I would go through withdrawals which has been the worst experience in my life. I have since become disabled and unable to continue working at a job that left me fulfilled. My family has also suffered along with me. I have been through all the modalities mentioned in the article but expense and energy are commodities I no longer have for short term solutions to a a long term problem. Cannabis would probably be the answer for pain relief but unfortunately I became a full time mother again at 52 and am in the process of adopting my 3rd grandchild who were removed from CPS because of my daughter’s mental illness. I can’t risk having them taken away because we live in a state that has not legalized marijuana for medical use. I know of so many people who have taken to buying street drugs to just be able to move around. Some are suicidal. Being lumped into the same category of addicts and being treated as one who is drug seeking is another issue that has caused me so much distress. I no longer go to doctors and tell them how bad my pain is because all I get is recommendation for PT, mental health referrals, and the too familiar “ you need to exercise “ routine. Ya, if only I could.

Max Beichert

One of our commenters here is, as I was, looking forward to the “invention of a machine” that could objectively and presumably accurately measure pain, as well as an alternative treatment that would be as effective as opioids for the relief of chronic pain. As to the latter, sadly, there is as yet no substitute as effective, despite the constant denials based on “studies,” which insist that opioids are of no (much less any) value. Also sadly, especially as I too had been looking forward to a breakthrough in the objective measurement of pain, there is now the claim of the development of a consistently accurate blood test that gives repeatable, and reasonably thus credible, results. However, in consideration of the possibilities of finally being able to document the amount of pain that sufferers may be in at any one time, it also occurred to me the question of overall accuracy based of the timing of blood draws, which may easily be low on one occasion, and equally high on another. Some may be in more pain at one time, typically highest at night according to studies, which is when it is unlikely that office health care professionals are doing blood tests, and in less pain during scheduled examination visits, when patients are especially careful to insure that blood levels of medicine are optimal (read “high enough”), candidly to avoid the stigma that gives rise to unjustifiable suspicion that low levels means you’re “selling.” The point is that any “objective” testing for pain unfortunately will not give rise to an accurate assessment of how each patient subjectively experiences chronic pain, simply because the experience itself is subjective, where the psyche itself factors in the additional “pain” initiated by anxiety, depression, fatigue, etc. (think of the experience of the so-called “Chinese water torture,” where of course we should all know that “water doesn’t hurt”). Once again, we have to learn to “be careful of what you wish for.”

Heidi, Seattle WA

CPP’s need more doctors, period! They need doctors willing to help CPP’s manage their pain, and stand up to the regulations and threats. Some really good words in this report, but they are only words. It is the doctors who need to provide action to help their patients. When will they step up?

dave

The PMTF is regressive morally socially, politically, and technically,
Morally it denies procedural justice by its despicably having 28 experts and one person in pain speak on behalf of 100 million people in pain- essentially without their advice or consent. The PMTF has not even met minimum legal standards for considering comments and obviously cares less about procedural justice. It is clear this is more of the same ol boy network mentality and neoliberal paralysis behind it.
Socially, it denies multistakeholderism- so the voice of not only people in pain is relegated to the feudalistic designs of PMTF members but so, too is the voice of insurers, employers, workers compensation managers, pharmaceutical companies(not that they need help being heard) etc In this regard, Congress has decided a precious few “experts” should design for the rest of society pain management requirements- as if these few experts had the wisdom and the caritas to do anything other then serve their own narrow specialized interests. So, this doesn’t even pass the laughter test.
Politically- this is as regressive as it gets for it denies democracy and republican requirements to enlarge the will of the public. The PMTF by design are fascist and right winged arch conservative- with all the attendant nonprogressive, nonadaptive get with the program mentality that goes with it. Let us be grateful the PMTF wont be giving a ted talk on progressivism or democracy or individualism anytime soon.
Technically, the PMTF is regressive for stale static treatment regimens that are for herds and not individuals- theyre prejudice against cannabis, and regenerative treatments is clear as is their defeatism towards curing pain. Theyre treatment beliefs are from the 1980’s and they promote static treatment regimens and top down managerialism as inviolate. Once again, tragically their technicism doesn’t pass the laughter test.
As MLK said- We have been given a bad check to have the PMTF.

Sharon

pain management has destroyed me. Put approximately 18 shots in my back and made me so much worse. I gave the benefit of the doubt not anymore

Sharon

pain management has destroyed me. At 18 shots in my back for pain management what did it manage nothing they made me worse.

F.S.T.

Good grief. The government offers, yet again, more “word salad.”

Give the care back to where it belongs, physician and patient. The years of opiate therapy incomparably improved my life! Now, from allegiance to “guidelines,” I’m back in bed because of reduced dosages. After 10 years, last month a doctor at the clinic I’ve never seen before pops in and says they’re reducing my dosage yet again. Great! I love my bed and not being able to have a life.(!!!)

Thanks, Kolodny! The street pusher is beckoning because they know what you’ve done to us.

Margaret

The government has to close these pain clinics. Let your primary doctor treat patient they know you your meds and conditions

Lindsey

Patients already know most of what has been written, and shake or heads over and over again.

These proposals encompass everything we’ve ever learned over time, with the added benefit of “having” chronic pain. Whether it be life long pain, decades pain, one year of pain, in all its severities and reasons, we know so much more than given credit for.

With the exception of cannibus, there isn’t one thing mentioned that CPP’S cannot educate better on.

What is written above is years and years down the road if ever and WE know it. What needs to happen in the interim, is to go back to our family doctors, who aren’t stupid, and give them and the employers back their freedom to take care of their patients pain the best way they see fit. I mean we all already know the problem with opoids isn’t here, but for such a small percentage that it shouldn’t even be factored in at this particular point in time.

Physical therapy is great, if you have long term pain because you blew your knee out, but believe it, even that patient isn’t going to thrive back to full health without long term (months) opioid relief. And this is just one example.
Any idea how many CPP’S “can’t” go to physical therapy? The majority! Why? It’s too expensive even with insurance.

So once again, our only choice it’s our own doctor.

Behavioral health? I cannot tell you how much money I spent trying to keep up with this requirement until there was no more and my only answer was- No More Counting Raindrops for $365 a pop! Which by the way was once a month. A get rich quick scheme is all that was.

Massage? Oh heck yeah, especially the ones who come to you. Does/did it help? So very much it did help. But, no money for that either.

Do back to my initial point. Give the power back to our doctors. Let them practice their Hippocratic oath!

And stop robbing the United States of it’s diminishing physicians. The CDC, the States, Congress, etc., are killing off the medical professional single handedly.

Gary Raymond

A lot of words and no solutions, David. People who have never suffered pain know all about pain, including doctors. Until a machine is invented that measures pain and an effective alternative to opioids is created, the chronically ill will continue to be criminally abused by Federal, State, and Local governments. Legally, how can draconian measures be implemented before the Task Force has issued their edict? Those who consume opioids and other controlled substances for recreational purposes are the ones who are obtaining contaminated material and are overdosing from ignorance. How are manufactured pills still getting into the black market in huge quantities after 3 years? How can Schedule I cannabis be legalized anywhere in the USA? Let’s take away cocaine from the lawmakers and the HHS.

People in chronic pain respect their lives and their medication. Think about it.

Debbie Nickels Heck, MD

I began learning hulse to treat pain properly as a 3rd year med student, took an elective in it my 4th yr and continued studying it from there on, unlike anyone else I knew which made me the only primary care Dr in my community who knew how to treat pain. I was well respected by those who understood its importance and misunderstood by those who feared the use of such medications. I got patients back to being productive at work and enjoying normal family lives then a misunderstanding led to an unethical social worker with the state known to make it her goal to put good Drs out of practice used a false allegation against me to have me labeled as a “drug abuser”, sent to evaluation facilities where she had people she could manipulate into giving false testimony against me, and reported this to the board leading to my listing my license. Upon meeitng me, the board realized something was amiss but had to act on the information they’d been given initially, fully expecting me to return in 90 days to be reinstated. However this social worker knew how to manipulate the system and prevented that as she’d been doing for 10 years before I’d come along and continued doing. Why hasn’t she been stopped? Board members change and haven’t caught on to her method of lying about good Drs. Why? I don’t know. The attorneys know but still she persists along with her attorney cohort. Hundreds of patients have been harmed in the interim by having lost good Drs, esp now that we’re in the age of fear and new Drs aren’t taught how to treat pain at all.