by David Nagel, MD
author, “Needless Suffering, How Society Fails Those with Chronic Pain”
Those are rare who fall without becoming degraded; there is a point, moreover, at which the unfortunate and the infamous are associated and confounded in a single word, a fatal word, Les Misérables.
– From Les Misérables, Vol III, Book VIII, Chapter V
Jean Valjean is one of the great characters of literature. As the protagonist of Victor Hugo’s Les Miserables, he finds a way to triumph over the evil of his fellow man. He becomes a true hero, one who takes the gifts he has been born with, develops them, then uses to them to help all those around him to make the world a better place. His journey starts in poverty. He is desperate and he is hungry, as is his widowed sister’s family he struggles to support. One day, tired of his hunger and theirs, he commits the unthinkable crime of stealing a loaf of bread. Unfortunately for him, his sister, and her seven children, he ends up in jail. His punishment for his crime and his multiple attempts to escape is 19 years in prison. We are left to imagine what happens to his sister’s family. The gross injustice of a system merciless to the poor destroys 8 lives. It almost destroyed a 9th. Jean leaves prison a changed man, a mere animal only existing to survive, oblivious to the cares and needs of those around him. He is a creation of that system, and the system is oblivious to its sins. The remainder of the story is a running battle between two sinners, Jean, a sinner soon to be turned saint, and the system, represented by Javert who would rather die than repent. It would appear that Jean is headed for no good, but then it happens. After stealing from a kindly bishop, he is offered a gift, one that confounds him. The gift is the bishop’s mercy. A simple act of kindness in an unfriendly world changes our sinner into a hero, one who spends the rest of his life paying forward this gift to all those he comes in contact with.
There is nothing abstract about this story. It happens in our country every day. In 1862 Victor Hugo wrote: “So long as there shall exist, by reason of law and custom, a social condemnation which, in the midst of civilization, artificially creates a hell on earth…so long as ignorance and misery remain on earth, there should be a need for books such as this.”
I love my country. However, we are not without sin. We lament our past injustices to Native Americans, African Americans, women, homosexuals, Jews, and others. We seek to fix the sins of the past. Yet, I would argue there are others who remain persecuted. I would argue that our social policies over the last 100 years have made an unnecessary living hell for both those who suffer from chronic pain and from addiction. Currently, 35-40 million Americans suffer from what has been referred to as “high impact” chronic pain. 2.5 million Americans suffer from some form of “opioid abuse disorder.” For most of the past century they have all been treated like criminals, imprisoned by an ignorant system lacking in mercy. For those addicted, hope is on the horizon. The social policies designed to help those addicted only harm those in pain. What is needed is a change in perception, a cultural transformation, to de-stigmatize the stigmatized. This modern day Jean Valjean seeks mercy. It is my contention despite all the mistakes being made in public policy to combat the “opioid abuse crisis,” there is hope for those in pain. In writing Needless Suffering, How Society Fails Those with Chronic Pain, it was my hope to bring attention to the needs of those who suffer, too often needlessly, and to suggest meaningful public policy to bring hope to the hopeless. Too often we trivialize pain management as merely medication management. It needs to be so much more than that and it can be so. It is my hope in writing this book that I can help effect that change. As I have written and talked to so many people about this issue, I am struck by how ignorant most people are about this problem, how myopic they are about the potential solutions, and how oblivious they are as to how we got here in the first place. As George Santayana has said, “Those who cannot remember the past are condemned to repeat it.” To create a better future, let’s take a moment to look at the past.
The Beginnings of Opioid and Cannabinoid Policy in America
The late 1800’s and early 1900’s were a very different time for drug policy. In a sense, one could have thought of it as the wild west. There was no strong regulatory oversight, and snake oil salesman abounded. Medical theories at the time suggested that disease was the result of too little or too much stimulus, and opium had the ability to effect this. As a result, opium was the most prescribed drug by physicians, and could be prescribed for all sorts of ailments. Parallel to this medical use was a growing problem with non-medical use. Opioid addiction, iatrogenic and not, became a growing problem. Some in the country viewed the problem as a security threat because those most commonly involved were males between the ages of 25 and 45, those of fighting age. During this time, it was recognized that the treatment of opioid addiction was the regular administration of opioids, ie maintenance therapy.
Both home and abroad, both in administrative circles, it was felt that something needed to be done to control the opioid problem. Physicians were losing faith in the power of opioids to treat, well, everything, and policy makers increasing looked as opioids as a scourge. Prior to 1904, control of medication was largely relegated to the states. That changed with the Federal Exclusion Act of 1904, which made importation of opium illegal for any but medicinal purposes. The most notorious federal legislation was the Harrison Act of 1914 and subsequent related judicial actions which placed great penalties on doctors who prescribed indiscriminately. Similar legislation in the 1930’s championed by prohibitionists and corporate interests competing against hemp presented to a largely dis-interested Congress resulted in a similar prohibition of cannabis. The results were predictable and unfortunate. Addiction became a crime punishable by sometimes absurd prison time. All but the most courageous physicians were afraid to prescribe opioids for anything but acute pain. Those complaining of chronic pain had a character flaw, a psychological diagnosis not worthy of respect. The reaction of patients and addicts was predictable. Those seeking help from their suffering took to the streets to get it, creating millions of “Jean Valjean” criminals, their only crime seeking relief from their suffering.
Those attitudes were clearly taught when I was in medical school, and, to a large extent it is my observation they still exist today. While I do not work with those addicted, my pain patients struggle to find someone willing to care for them, their struggles aggravated by an increasingly bottom line driven, fragmented health care system the doesn’t have the time to care and a medical education system that doesn’t see chronic pain as a problem worthy of research or treatment.
The Tide is Changing
By the 1960’s, it became apparent to some, that legislation on opioid addiction was not working and that addiction was not a crime or a personal weakness, but a medical condition worthy of compassion and treatment. A White House Conference on the issue was convened in 1962, and that led to a change in how addicts were treated. Those in pain would have to wait a while. In 1985, Kathleen Foley published an article advocating the use of opioids for end of life care, and 1986, Dr. Foley and Dr. Russell Portenoy, both from Sloane-Kettering, followed with a similar article demonstrating efficacy of sustained opioids for those who suffer from chronic, non-malignant pain. In a sense, these articles served to open a flood gate for legislative action. In 1998, the Federation of State Medical Boards published its guidelines for opioid prescribing which were subsequently accepted by all states as rules or guidelines. In 1999, Congress passed the Pain Relief Promotion Act which encouraged prescribers to compassionately treat pain. The decade of 20001 – 2010 was designated as the Decade of Pain Control and Research. While I would argue that these actions largely fell under the radar of most people, they served as an important foundation for what followed and what is yet to come. In 2009, the Pain Care Policy Act was passed as part of the Patient Protection/Affordable Care Act. This directed the Institute of Medicine to study the issue of pain in America and make formal recommendations for social change in managing this issue. Released in 2011 and entitled: “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” the report directed the department of Health and Human Services to create a National Pain Strategy, which was released in 2016.
Simultaneous to these developments, though was what has been called a growing opioid crisis. I would prefer to call this as an opioid abuse epidemic as I would argue we simultaneously have problems with over and under prescribing combined with a shifting of preferred drugs of addiction to more dangerous forms of opioids. To help combat this crisis, many states passed feel-good legislation which has had the unfortunate effect of harming those suffering from chronic pain. Such legislation has not helped addicts in the past either. The net effect remains to be seen for either group. At the federal level, though, the Federation of State Medical Boards passed updated guidelines in 2013 and the Center for Disease Control Passed opioid prescribing guidelines also in 2016.
Where is the silver lining?
The recent behavior of state and federal authorities towards opioids has harmed many pain patients. I see the results every day in my office. The reality is that our options for treating pain are limited, and opioids are an important tool in this battle. So, the question needs to be posed to these authorities, if you are limiting access to opioids, what steps are you willing to take to help develop other options for care? This is not a new question, and perhaps it will receive greater emphasis as a result of the opioid crisis. It has been my observation that in colloquial terms, pain management and opioid prescription are too often viewed inter-changeably. It is also troublesome the needs of treating and preventing opioid abuse supersedes that of those who suffer from chronic pain, even though the ratio of those who suffer from high impact chronic pain to those who abuse prescription and non-prescription opioids approaches 20 : 1. For example, recently President Obama provided $100 million of federal funds to address the opioid abuse crisis. At the same time, pain researchers are literally begging for money. That needs to stop, and statements within the FSMB guidelines, the CDC guidelines, and the National Pain Strategy all call for this to happen. All include similar statements that acknowledge the conflicts that occur between public policy for addiction and chronic pain, but demand a balance between those policies. The FSMB guidelines outline two important issues:
- Undertreatment of pain is recognized as a serious public health problem that compromises patients’ functional status and quality of life. A myriad of psychological, social, economic, political, legal, and educational factors—including inconsistencies and restrictions in state pain policies—can either facilitate or impede the ability and willingness of physicians to manage patients with pain
- While acknowledging that under treatment of pain exists, it must be understood that chronic pain often is intractable, that the current state of medical knowledge and medical therapies, including opioid analgesics, does not provide for complete elimination of chronic pain in most cases, and that the existence of persistent and disabling pain does not in and of itself constitute evidence of under treatment.
In short, there is no universal understanding of or treatment for chronic pain. Chronic pain is its own disease state that results in substantial bio-psycho-social disability which is aggravated unnecessarily by an ignorant and or un-caring social hierarchy.
The National Pain Strategy is an extraordinary document which seeks to correct these problems. It acknowledges the problems with opioid abuse, it points out the deficiencies in our ability to care for those who suffer, and it offers a 6 point strategy for remedying these deficiencies by addressing: 1) population research, 2) prevention and care of chronic pain, 3) disparities, 4) service delivery and payment, 5) professional education and training, and 6) public education and communication.
What is also exciting is that for the first time in my career, patient advocate groups are standing up for their rights. The Chronic Pain Advocacy Task Force has outlined four core beliefs which are being accepted by other groups including the National Pain Strategy:
- Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.
- Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact.
- Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment.
- Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability and even suicide.
Please note that these beliefs, created by individuals who suffer from chronic pain, are calling for a much wider number of care options including self-management programs. While they recognize that opioids will always be an important treatment option, and the process to receive them should not be egregious (as it is in too many states now), the word opioid is never mentioned in these core beliefs.
Another exciting development has been the creation of state policies for medical cannabis, directly challenging federal authority. Cannabis and cannabinoids have great potential as therapeutic agents for pain, and at least 15 percent of pain sufferers risk government reprisal by illegally obtaining them for self-medication. Federal policy about cannabinoids has never made any sense, and has unnecessarily harmed millions of individuals. The head in the sand attitude of the federal government is being challenged by consumer advocacy groups, state legislatures, and medical groups such as the AMA.
Much is happening, but much needs to happen. Pain patients are treated as pariahs by doctors, who often refuse to care for them. They are treated like criminals in a court system which views them as guilty until proven innocent. They are discriminated against in a workplace which views them as cost and risk averse. They are the targets of unsavory snake oil salesmen both in the medical and non-medical settings. And so on. These things also need to change. In Needless Suffering I outline 16 social institutions and how the behavior of each adversely affects the lives of those who suffer from chronic pain. More importantly, I offer solutions for the problems created. My goal is to broaden the social discussion on chronic pain beyond opioids and bring a sense of dignity to those who suffer. In promoting this discussion, I would like to see an end to the legion of Valjean’s who suffer needlessly and a destruction of the Javert of ignorance. In doing so, I hope, like Valjean’s bishop savior, to provide mercy to the need and a sense of hope to the hopeless. I welcome you to join this journey.