LOST IN CHAOS: The State of Chronic Pain in 2016 – Presented by the Pain Action Alliance to Implement a National Strategy (PAINS)
In June 2011, the Institute of Medicine published Relieving Pain in America (RPA or Relieving Pain) and established as its highest priority development of a national population health plan to be completed by the end of 2012
In March 2016, the Department of Health and Human Services (HHS) published the National Pain Strategy (NPS). The NPS advanced all the recommendations made by the IOM committee and the notion that underpinned Relieving Pain, i.e., a “cultural transformation in the way pain is perceived, judged and treated” is needed.
Furthermore, the National Pain Strategy provided a plan to transition from a biomedical pain care model, i.e., one based on prescription medications, interventional procedures and surgeries, to a comprehensive bio-psychosocial chronic disease management model.
Unfortunately, the report arrived amidst a firestorm around the new guideline for opioid prescribing published by the Centers for Disease Control (CDC) just days before.
Throughout 2016, the attention of the media, the public, healthcare providers, and policy makers was on the opioid epidemic—NOT chronic pain—and to the extent that chronic pain received attention, it was conflated with the opioid epidemic.
Consequently, to date, the National Pain Strategy has received little attention. The tension between these two public health issues— chronic pain and addiction—characterizes the state of pain in 2016.
The tension between these two public health issues— chronic pain and addiction—characterizes the state of pain in 2016.
In 2016, the estimated 33,000 unintended deaths in 2015 associated with opioids reported by the CDC eclipsed concerns about under treated chronic pain and publication of the National Pain Strategy.
Unfortunately, many have pitted these two important public health issues against one another as problems competing for attention and resources, or, worse yet, they have been conflated into one concern with what the IOM committee labeled “the opioid conundrum” at the center.
Beyond the opioid connection, there are multiple overlapping public health issues, including:
- Both chronic pain and opioid use disorders are diseases
- Both patient populations have been stereotyped, stigmatized and poorly served by the healthcare delivery system
- Both require more research, data collection and analysis
- Both call for a public health response
- Both advocacy groups are far more likely to achieve their articulated goals by collaborating on common concerns.
The CDC’s Actions Spark a Firestorm
Although the majority of the twelve recommendations made by the CDC were widely supported, 2016 began with a firestorm of activity by advocates for those living with chronic pain who expressed concerns that:
- Those convened by the CDC to develop the guideline were predominantly addiction specialists
- Primary care providers and chronic pain patients were not involved in the CDC’s process
- Strong recommendations were based on “weak evidence”
- Dosage and duration limits for opioids were prescribed
Although labeled “voluntary,” state medical boards, third-party payers, and others would codify them
At the end of 2016, the National Fibromyalgia & Chronic Pain Association (NFMCPA) circulated a survey to their constituents.
Within 24 hours, they received nearly 4,500 responses. Ultimately, more than 5,000 people responded, and NFMCPA received more than 6,000 comments revealing a patient population filled with anxiety about their current situation.
The following responses to the NFMCPA survey are particularly illuminating; when asked:
- Would you say that people understand that chronic pain diminishes your quality of life? 85.7% responded NO
- Would you say that you have fear of not being able to find healthcare to help you control your pain? 77.7% said YES
- Do you feel that people believe you about your pain? 71% said NO
A Moral Imperative to Address Chronic Pain -Imagining 2017 – 2022
First among the IOM committee’s “Underlying Principles” was the statement that “effective pain management is a moral imperative, a professional responsibility and the duty of people in the healing professions.”
This notion was carried forward and was foundational to development of the National Pain Strategy, but the reality is that the current situation makes it very difficult for caring physicians to provide the comprehensive care their chronic pain patients need and deserve.
Imagining 2017 – 2022
In early 2016, PAINS (Pain Action Alliance to Implement a National Strategy), producer of this report, made a decision to focus its attention on one aspect of the NPS, i.e., to change the public narrative about chronic pain and those who live with it.
The key audience of PAINS’ No Longer Silent initiative is the media. The goals of this initiative are to:
1) build and mobilize a public narrative regarding chronic pain
2) showcase chronic pain patients and the lifealtering effects this disease has on their lives
3) highlight the strength, courage, and success of those who manage to live a meaningful life despite debilitating pain by delivering a message of hopefulness
4) advocate for comprehensive pain management, including the appropriate use and management of opioids to treat chronic pain.
The focus of this report, however, is on those who live with chronic pain, many of whom feel they have been scapegoated by the opioid epidemic and believe that their lives have been made even more difficult by the conflation of these two important public health issues.
Reality suggests that chronic pain patients deserve attention and respect. Against amazing odds, they prevail through strength of character, tenacity, and courage.