In the summer of 1994, I was working at my desk at the Department of Justice when my back started to burn. Moments later, my body seized up and I fell to the floor. Suddenly, at the age of 30, I was no longer able to sit or stand. I could barely walk short distances. These limitations, related to a surgical mishap, would continue for almost 20 years.
After dozens of failed treatments, I reluctantly tried prescription opioids. The pain medication enabled me to work despite my condition. I argued cases in federal court from a foldable reclining chair, negotiated settlements by video teleconference and, working remotely, managed litigation in U.S. attorney’s offices across the country.
When medical advancements led to an improvement of my health, I went off opioids without incident.
I was, as it turns out, incredibly lucky. A report released last month by Human Rights Watch paints a cautionary and at times harrowing picture of what pain patients are experiencing today.
Because of well-intended efforts to address the overdose crisis, many doctors are severely limiting opioid prescriptions. Patients who rely on opioid analgesics are being forcibly weaned off the medication or seeing their prescriptions significantly reduced. Other patients are unable to find doctors willing to treat them at all.
One such patient, Maria Higginbotham, has had more than a dozen surgeries to correct the collapse of her spine. She suffers from a painful condition in which the spinal cord fuses with adjacent membranes. Last year, her physician cut her pain medication by 75 percent, explaining that the reduction was to comply with federal guidelines.
In the past, Higginbotham could function. Now she needs assistance just to get out of bed and go to the toilet.
The federal guidelines Higginbotham’s doctor cited were issued in 2016 by the U.S. Centers for Disease Control and Prevention. They were intended as non-mandatory recommendations for primary care physicians.
Increasingly, the guidelines are treated not as recommendations but as one-size-fits-all mandates. They are being misapplied by physicians, state legislatures, insurers and Medicaid programs.
Some physicians told Human Rights Watch researchers that they had taken patients off opioids, or reduced patients’ prescriptions, against their better clinical judgment.
“You set yourself up for a liability, even when you know they’re not addicted and they’re benefiting from opioids,” one physician said.
Other doctors said they had stopped treating pain patients altogether — even patients who don’t use prescription opioids.
It’s true that opioids were prescribed liberally in recent decades. Doctors began doing this in the 1990s. There were some bad actors, such as “pill mills” and wayward pharmacies. Opioid medication too often fell into the wrong hands.
Moreover, opioids are not the magic bullet we once believed them to be. The evidence about their efficacy across a broad population is limited. Even when their use is appropriate, opioids carry risks, and the risks increase at higher doses. The CDC was right to encourage judicious, responsible prescribing.
But chronic pain is a large umbrella category, encompassing a wide range of injuries and diseases, some of which are incurable. A one-size-fits-all approach to treatment does not work.
The recent clampdown has had harmful consequences. Some patients told researchers that they were forced to quit working or go on disability when their medication was denied. Others are now homebound. Many mentioned the possibility of suicide.
Patients also said that they were turning to alcohol or illegal substances to treat their pain.
What began as an effort to protect patients may be morphing into one that is harming them. The CDC’s National Center for Health Statistics estimates that 50 million Americans have pain every day and nearly 20 million have pain that limits major life activities. If the experiences that patients described to Human Rights Watch are common, the harm to patients could be widespread.
The CDC’s own data show that fatal overdoses are driven largely by illegally produced fentanyl, its analogs and heroin, not by medically prescribed opioids.
For all these reasons, the CDC should address the misapplication of its guidelines, as the American Medical Assn. recently did. The agency needs to revise its guidelines to recommend that physicians not abandon pain patients or engage in “forced tapering.”
The CDC should also study and address any unintended consequences of its 2016 guidelines, as it promised to do.
Tackling the overdose crisis is a vital public policy goal. But chronic pain patients should not become casualties in that fight.
Kate M. Nicholson is a civil rights and health policy attorney. She served for 20 years in the Justice Department’s civil rights division, where she drafted current regulations under the Americans with Disabilities Act. She gave a TEDx talk about chronic pain, “What We Lose When We Undertreat Pain.”