Laura Mills and Diederik Lohman
In her recent blog, “America’s Opioid Epidemic: A Rights-Based Approach,” Juliet Sorensen outlines key elements of a rights-based response to the overdose crisis that is claiming tens of thousands of lives in the United States each year. Human Rights Watch wholeheartedly agrees that a human rights framework should be fundamental to any response to the overdose epidemic, but that it should not undermine the rights of chronic pain patients to adequate treatment. Human rights, including the right to health, should be upheld for all.
Many of the strategies outlined by Sorensen to tackle the overdose crisis have long been advocated and supported Human Rights Watch. These include: greater access to naloxone, an overdose-reversing medication that has saved countless lives; keeping drug users out of the criminal justice system, which creates unnecessary harms for those who use drugs; expanding Medicaid to make medical treatment more accessible overall, a policy that gave some 1.2 million people who use drugs access to appropriate treatment.
But unfortunately Sorensen accepts some commonly held assumptions that are erroneous or in dispute, and she fails to adequately address the rights of patients with chronic non-cancer pain to appropriate treatment, including opioid medications.
Like many others, Sorensen incorrectly states that the United States “opioid epidemic… [has killed] 70,000 people in 2017.” In fact, 47,000 overdose deaths involved opioids in 2017; the rest were due to other substances. Sorensen correctly notes that “overdose deaths involving prescription opioids have been increasing since at least 1999.” But while there is little doubt that these medicines have played a significant role in the overdose crisis, most overdose deaths involving prescription opioids also involve other substances (known as polypharmacy), making it difficult to determine the actual cause of death.
Perhaps most importantly, Sorensen reinforces the increasingly popular view that less opioid prescribing is almost always safer for the patient. While well-intended, an inflexible approach mandating less prescribing actually harms chronic pain patients who have a legitimate medical need for opioids. In a recent report, Human Rights Watch found that many chronic pain patients who were involuntarily weaned off their opioid medications—or in some cases tapered abruptly and without warning—faced significant adverse consequences.
In some cases, their pain increased, and as a result their physical health declined to the point where they often couldn’t carry on with day-to-day activities that had previously been no problem for them. Some required more care from others and couldn’t participate fully in work, social, or family life, which led to isolation, anxiety, and depression. In several cases, patients we interviewed had resorted to alcohol and other drugs to cope with their abrupt termination of medications, and some contemplated suicide.
In many cases, these patients weren’t deprived of their medications because doctors thought they didn’t need them or that they were misusing them—in fact, almost all these patients said that they regularly submitted to urine tests and pill counts. These patients were often deprived of their medication simply because their physicians were afraid. Doctors fear legal liability and scrutiny by the Drug Enforcement Agency and other law enforcement bodies and worry that their license could be revoked by their state medical board. When they are repeatedly notified by insurance companies that they are prescribing more opioid medicines than their peers, they worry about losing their relationship with those companies.
Sorensen mentions that the Guideline for Prescribing Opioids for Chronic Pain, a set of recommendations for primary care physicians issued by the Centers for Disease Control (CDC) in 2016, can help ensure that “all patients receive safer, more effective pain management.” Human Rights Watch agrees that this Guideline strikes a careful balance by urging more cautious prescribing and better screening and monitoring of patients while simultaneously encouraging doctors to use their clinical judgment to decide whether a patient needs opioids or not: some patients do still warrant opioids, some may need them at high doses.
Despite this careful approach by the CDC, we found that physicians often leaned on the Guideline to deny patients their right to adequate care, using it as a justification to wean patients off their medication without their consent. While research about involuntary tapering is limited, one study has shown that those who are forced off their medication have a heightened risk for suicidal thoughts and actions, and anecdotal evidence we collected shows the destabilizing effects such actions by a medical provider can have.
Another key finding in the Human Rights Watch report is that chronic pain patients who are weaned off opioids are often not given adequate access to alternative physical and mental health services. Insurance plans often give limited or no coverage to cost-intensive non-pharmacological treatments like physical therapy, acupuncture, massage, or chiropractic manipulation. Chronic pain is often associated with other psychosocial issues, but many insurance plans don’t adequately cover mental health services. The result is that chronic pain patients are being involuntarily taken off medication that helped them live stable and functional lives, but denied alternative services that might help make the weaning process easier and help them manage their pain.
While we do not know how widespread the practice of involuntary tapering is, we do know that rates of prescribing high doses have declined precipitously since the CDC Guideline was issued. While many of these dose reductions may have been appropriate and perhaps did no harm to patient health, data about patient outcomes overall are sorely lacking. We do not know how many patients who are forced off their medication commit suicide or die, how many are hospitalized, how many drop out of treatment, and how many resort to illicit drug use.
The research shows that the harm created by the response to the overdose crisis is real and significant. But the government has paid little attention to reducing this harm or even measuring it. Human Rights Watch has called on the CDC to amend its Guideline, measure health outcomes for chronic pain patients, and be more thorough and transparent about the data it collects on overdose deaths. Human rights should be embedded into any response to the overdose crisis, but they can’t be selectively applied—chronic pain patients also have a right to health.
Laura Mills is a health researcher at Human Rights Watch
Diederik Lohman is a visiting scholar at the Dornsife School of Public Health at Drexel University and the former health director at Human Rights Watch