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.
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