Ed Coghlan.

As we know, the illicit use of nonprescribed chemicals that fall into the opiate class has overtaken the public imagination and strained public resources in some locales. The media is replete with the latest stories of addiction, overdose, overcoming addiction, and resuscitation from overdose. The stories are supported by reports from state departments of health to CDC and incorporated in their public data for all cause mortality.

The public debate has approached a fevered pitch that has rushed the halls of Congress influencing the discussion on what form health care should take and how many dollars should be allocated to the ‘opioid epidemic.’ At the local level, some communities are debating how many times repeat offenders should be resuscitated and where the money will come from to support policing and public programs. Genuine debate about what constitutes harm reduction is now entering the design process of local public health policy and regulation development. In July, 2017, a cross section of sixteen Senators issued a letter demanding that the Drug Enforcement Administration continue to ramp down the production quotas of prescription opiates – even though the evidence is clear that prescription drugs have been steadily reducing and now represent a very small part of the national overdose numbers. Attorney General Jeff Sessions has announced a wide scale public ramping up of resources to fight the ‘scourge of drugs in our communities’ by conducting crackdowns targeting Medicare and Medicaid fraud through prescribing, suggesting that we reinstate programs with poor evidence of effectiveness such as DARE, and increasing actions aimed at civil asset forfeiture.

President Trump appointed Governor Chris Christie as the nation’s ‘opioid czar.’ To date, one hearing has been held with invited participants representing various sectors of the addiction community speaking strongly for more consistent and better public response to addiction as a disease deserving of treatment. A commissioned summary of recommendations has yet to be issued from this process.

New voices are emerging that raise notes of caution in the public conversation reflecting that substance use disorders and their treatment should not get priority over the treatment of the whole person, their disease processes, and their characteristics and needs. There is increasing recognition that the public conversation conflates substance abuse disorders (SUDS) and their associated interventions, with the needs of caring for persons of all ages with chronic and intractable diseases who rely on medication assisted treatments which include opiates in one or more forms, used singly or in combination with other methods and medications. Along with this is the continuous reminder that each patient is different in their ability to benefit from and process opiates or other substitutes and that a one size fits all approach to care may create more risk of harm than benefit. Training practitioners to be sensitive to and treat these differences in a team environment is likely to be far more effective than managing dose regimens.

States have proliferated a variety of laws and regulations in response to the national ‘crisis,’ often in response to the urgent public conversation. Many incorporate some features of the CDC Guidelines (March 16, 2016) and others have gone off in their own direction based on the advising of local medical boards. A summary of the laws is found on the National Association of State Pain Laws (NAMSDL) link – http://www.namsdl.org/. The Federation of State Medical Board Guidelines for Chronic Pain is found at this link -http://www.fsmb.org/Media/Default/PDF/FSMB/Advocacy/pain_policy_july2013.pdf

Alternatives to opioids have also emerged for use with addiction sparing, reductive treatments – Naloxone, Buprenorphine (Subutex), and Narcan, and combination drugs like Suboxone (a buprenorphine, naloxone combination). Into this fractious mix of CDC Guidelines, VA Guidelines, state pain laws, and insurance rationing, some practitioners have resorted to utilizing drugs clinically trialed for addiction intervention for the purpose of treating chronic and intractable long term pain. Other states, like Tennessee, disallow the use of buprenorphine and its cousins for any application except where there is documentation of addiction or substance use disorder. This has led to the conflation of addiction or substance use disorder with dependency resultant from utilization for long term chronic illness outside of palliative care programs. This is further separated from caring for the psychological aspects of chronic illness through mental health supports and patient education. If there is benefit to be gained from easing pain with opioid alternatives, the addiction treatment filter in fact short changes the chronic pain patient by failing to conceptualize their treatment needs properly. There are increasing reports from the patient community of persons who are enrolled in palliative care programs being denied opioids for relief of even cancer related pain due to the conflation of dependence with risk of addiction or harm for end of life care.

This uneven public response has resulted from poor leadership of federal policy development, misalignment of public outcome objectives, and failed implementation. It seems as though nobody is in charge and every public agency is flailing in the absence of clear and thoughtful public goals that address patient centered practices. Is addiction a crime that must be prosecuted or an illness that must be treated? If persons with chronic pain are abandoned and turn to the street for palliation, at great risk of self-harm, does this make them addicts who risk prosecution or desperate patients seeking relief? It’s a set of problems that invades every socioeconomic and demographic strata.

No voice has been more insistent on characterizing long term opioid use outside of palliative care as substance use disorder than that of Dr. Andrew Kolodny, medical director of Phoenix House, founder of PROP, Member of Steven Rummler Foundation, and Professor of Addiction Studies at Brandeis University. Dr. Kolodny’s message has proliferated throughout the media, magnified by Annenberg School of Journalism, HBO, Rummler Foundation’s participation in the development of CDC’s Guidelines, and miscellaneous media outlets.

There has been pushback to this messaging from his colleagues and the patient community. The pushback is increasing as suicide among chronic pain patients who have been abandoned is documented, and as treating professionals increasingly observe that stable patients who use opioids become decidedly less stable with forced tapering imposed by practitioners who opt to adopt CDC Guidelines or alter the course of treatment altogether by discontinuing the prescribing of opiates.

What is our goal? Is it to manage a dose regimen or to increase or maintain the functionality of the persons who seek care in their community? As a nation we are conflicted about our objectives. Social media is alive with the opiate debate. Facebook groups and twitter accounts magnify voices and provide a platform for debate and thoughtful discussion.

It is within the social media platform of twitter, that Dr. Andrew Kolodny issued a challenge to his colleagues that has been picked up by the patient community. Speaking to his colleagues he asked so all could overhear,

“Outside of palliative care, dangerously high doses should be reduced even if patient refuses. Where exactly is this done in a risky way?”

He further inquired,

“I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion.”

Excellent questions.

The most affected by this conversation are persons in pain who are keenly aware that they have been removed from policy formulation discussions which lack a consistent patient presence at every level. There are three communities of care to be concerned about here: (1) Those who need consistent care for illicit substance use and abuse, (2) those with chronic illness that generates intractable pain, and (3) those who are members of both communities of care. These are complex communities without consistency of policy or service. Of course, consumers who are treated for chronic pain, no matter their primary identification with a community of care, have taken up the challenge of providing this information.

At National Pain Report, we believe in dialogue across all sectors of the health care community. We assume that Dr. Kolodny’s inquiry to his colleagues is made in earnest, is genuine and best addressed by affected persons. So, in the spirit of good science and wanting to help a colleague expand his understandings, we offer our patient readers the opportunity to answer Dr. Kolodny’s two questions exactly as he posed them to his colleagues in the twittersphere:

If you have been on a stable routine of care that involved opiates and were forced to taper and you have been harmed by this process, please respond to Dr. Kolodney at @andrewkolodny, and at the same time copy @NatPainReport. Use the hashtag #forcedtaper. Identify the location and city and state who has risked your safety by abandoning your care or forcing you to undergo a taper that was unsafe or led to complications.

We also offer our practitioner readers the same opportunity to tell Dr. Kolodny (@andrewkolodny) and the National Pain report (@NatPainReport) whether you have reduced your patient loads, tapered patients in accordance with CDC or VA Guidelines, or discontinued opioid prescribing regimens altogether in favor of other methodologies or practices. Tell us what’s going on within your practice discipline and your state location. Share with us how you are making decisions within this increasingly labile and complex care environment.

If you don’t have a twitter account, now is a good time to get one. Tell it like you have experienced it in 140 characters.

If you don’t want to set up a twitter account or don’t know how, share your answers with us at National Pain Report. We will make sure they are shared with our colleague Dr. Kolodny. Let’s work toward an improved and solution focused conversation.

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